RE: [TMIC] OT your private info
Maybe I should retract this message. Or at least, tell you to ignore the part about requesting to be removed. They didn't take me off or email me 'further instructions'. Apparently that was just a way to add my email to their other info. Sally I FOUND MYSELF, HUBBY AND DAUGHTER ON SPOKEO BUT ALL THE INFO IS OLD. IT DOES NOT HAVE CURRENT ADDRESS ON EITHER OF US. IT LOOKS AS THOUGH YOU HAVE TO PAY TO JOIN TO GET MORE PERSONAL INFO, WHICH I DON'T CARE TO DO. PATTI - WISCONSIN -Original Message- From: Akua [mailto:a...@artfarm.com] Sent: Thursday, January 13, 2011 2:50 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] your private info They had a ton of information A friend told me about this last month. And i saw my name in several locations -- which made me wary! Check out the following info. I did and they have a lot of personal info but also a lot of misinformation. You might want to try to remove your name. See below - someone had posted this on facebook: There's a site called Spokeo.com that's an online USA phone book w/personal information: everything from pics you've posted on FB or web, your approx credit score, home value, income, age, etc. You can remove yourself by searching for yourself on their site, copying the URL of your page, then go to the bottom of the page and click on ...Privacy button to remove yourself. Copy repost so your FB friends are aware When I tried, it asked for my email, then didn't take me off! It said to check my email for further instructions. I haven't gotten the 'instructions' yet! Good luck. Sally --
[TMIC] apology
My apology to everyone for not marking my last message (privacy) O.T. I just sent it to my entire address book to warn everyone and forgot that it included the TMIC, and that I should have marked that O.T. Sally
[TMIC] your private info
Check out the following info. I did and they have a lot of personal info but also a lot of misinformation. You might want to try to remove your name. See below - someone had posted this on facebook: There's a site called Spokeo.com that's an online USA phone book w/personal information: everything from pics you've posted on FB or web, your approx credit score, home value, income, age, etc. You can remove yourself by searching for yourself on their site, copying the URL of your page, then go to the bottom of the page and click on ...Privacy button to remove yourself. Copy repost so your FB friends are aware When I tried, it asked for my email, then didn't take me off! It said to check my email for further instructions. I haven't gotten the 'instructions' yet! Good luck. Sally
Re: [TMIC] Is anybody there? I; m trying to find someone who remembers meeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee
Hi Jude and Alton, I remember you both! How are each of you? I haven't been on TMIC very much since moving to Utah - just recently 'signed on' again. But I remember you both from when I was first hit with TM in 2005 when I lived in Hawaii. I've particularly thought about you Jude since I tore my Achilles tendon, apparently while stretching, but without realizing anything had happened - until the pain got really bad. It reminded me of how you had broken both of your legs just by stretching out! I hope by now you've healed well and maybe can use your legs a little at least? And the thing I remember about you, Alton, is that you were a scientist - and it seems like you liked to cook or bake? Was it bread? I can't remember the latter for sure. Hope all is well with you, Happy New Year, Sally Judy, we all remember you. What is your question? Alton
Re: [TMIC] WARNING - don't overstretch
Interesting to read these last two emails, as it reminded me of how I injured myself last summer by overstretching, but not by the same kind of accident as did Wim! I didn't even know I'd done it! We stretch to help manage the spacticity, right. Well, I finally went to a podiatrist when my left ankle had been hurting worse and worse. He told me I had TORN my Achilles tendon! Apparently, I had gradually stretched it too much and it had torn 33%! It healed in a few months, but still hurts almost as much as before it healed. Now they tell me I have Sural Nerve Neuritis - apparently from scar tissue pressing on the nerve??? Good news is that the Podiatrist recommended Lyrica, which just happens to also be good for spacticity, too. I've only been on it a couple of weeks but it seems to be helping. Bottom line is, PLEASE BE CAREFUL NOT TO OVERSTRETCH! Apparently, b/c of the spacticity, there's not as much give as there normally would be, and it facilitated the tear. And even more, it's the exact pain I've had in my hip (thigh) for 4 years, which they decided was from overcompensating for my right leg which was the one most affected by the TM. But the podiatrist agreed that if I could tear at the ankle, I could well have torn a tendon in my thigh/hip. It all makes sense b/c someone had talked me into doing some extreme stretches shortly after the initial TM, thinking that would help me. At the time I didn't have too much feeling in that leg and didn't notice how bad it was until my feeling improved! But I'm pretty sure, now, that that was what caused this sciatica-like pain, too. I've been wanting to post about this to warn others about overstretching. (I tend to easily go to extremes! It's keeping that balance; being 'moderate' that I have a problem with. And now I'm paying for it! :) Happy New Year, Sally I had a hamstring problem too. Therapists had me doing lots of stretching and I am back to normal (if you can call TM normal) now. Good luck with it.Spain sounds like a great cure!Tell us about the trip when you get back. Janice From: wim from holland Sent: Thursday, December 30, 2010 7:31 AM To: jan...@centurytel.net ; TMIC Subject: RE: [TMIC] Janice Normaly I could say, just fine, not better or worse. After all this time it was very study. But last summer I overstreched my hamstrings by a fall. A very stupid one, sitting on the bed I reached too far for clothes on the floor and slide from the bed. I jused after that time my wheelchair all the day, because standing and walking with crutches was too painfull. Now after recovering, it is hard to get back to what I could do before. I hope in summer when we go to Spain I can get it back in the warm sun and dayly in the swimming pool. Wim From: jan...@centurytel.net To: wim_from_holl...@hotmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] Date: Mon, 27 Dec 2010 10:31:41 -0600 Wim, it is great hearing from you again!How are you doing besides learning to be grandparents. Janice From: wim from holland Sent: Monday, December 27, 2010 9:03 AM To: TMIC Subject: [TMIC] Gelukkig Nieuwjaar!! Happy new year everybody, hopefully this will be the year that makes an end to TM, and if not, don't give up hope and keep the head up. Last two years were very strange. We become grandparents, but we also became orphans this year. Next year our second grand child will be born. Wim from Holland.
Re: [TMIC] WARNING - don't overstretch
'how will i know if i have overstretched until i have done it?' Actually, I think this is a valid question! I know I need to still stretch, but I'm slightly paranoid about injuring myself again, as I had no idea, even, when I over-did it the first time! If anyone has an answer, please tell us! :) Sally ignore this if it sounds to pessimestic. not over stretching sounds a lot like i need to take the medicine right before the pain starts for best results. how am i going to know when the pain is going to start just as how will i know if i have overstretched until i have done it? my best remedy is just to be me,,,;) thought i was going to say something else stupid didnt you! lolhappy new year. dont over stretch and take your pain meds just before the pain hits for best results --- On Thu, 12/30/10, kale...@sfcn.org kale...@sfcn.org wrote: From: kale...@sfcn.org kale...@sfcn.org Subject: Re: [TMIC] WARNING - don't overstretch To: Janice Nichols jan...@centurytel.net Cc: wim from holland wim_from_holl...@hotmail.com, TMIC tmic-list@eskimo.com Date: Thursday, December 30, 2010, 2:14 PM Interesting to read these last two emails, as it reminded me of how I injured myself last summer by overstretching, but not by the same kind of accident as did Wim! I didn't even know I'd done it! We stretch to help manage the spacticity, right. Well, I finally went to a podiatrist when my left ankle had been hurting worse and worse. He told me I had TORN my Achilles tendon! Apparently, I had gradually stretched it too much and it had torn 33%! It healed in a few months, but still hurts almost as much as before it healed. Now they tell me I have Sural Nerve Neuritis - apparently from scar tissue pressing on the nerve??? Good news is that the Podiatrist recommended Lyrica, which just happens to also be good for spacticity, too. I've only been on it a couple of weeks but it seems to be helping. Bottom line is, PLEASE BE CAREFUL NOT TO OVERSTRETCH! Apparently, b/c of the spacticity, there's not as much give as there normally would be, and it facilitated the tear. And even more, it's the exact pain I've had in my hip (thigh) for 4 years, which they decided was from overcompensating for my right leg which was the one most affected by the TM. But the podiatrist agreed that if I could tear at the ankle, I could well have torn a tendon in my thigh/hip. It all makes sense b/c someone had talked me into doing some extreme stretches shortly after the initial TM, thinking that would help me. At the time I didn't have too much feeling in that leg and didn't notice how bad it was until my feeling improved! But I'm pretty sure, now, that that was what caused this sciatica-like pain, too. I've been wanting to post about this to warn others about overstretching. (I tend to easily go to extremes! It's keeping that balance; being 'moderate' that I have a problem with. And now I'm paying for it! :) Happy New Year, Sally I had a hamstring problem too.   Therapists had me doing lots of stretching and I am back to normal (if you can call TM normal) now. Good luck with it.  Spain sounds like a great cure!  Tell us about the trip when you get back. Janice From: wim from holland Sent: Thursday, December 30, 2010 7:31 AM To: jan...@centurytel.net ; TMIC Subject: RE: [TMIC] Janice Normaly I could say, just fine, not better or worse. After all this time it was very study. But last summer I overstreched my hamstrings by a fall. A very stupid one, sitting on the bed I reached too far for clothes on the floor and slide from the bed. I jused after that time my wheelchair all the day, because standing and walking with crutches was too painfull. Now after recovering, it is hard to get back to what I could do before. I hope in summer when we go to Spain I can get it back in the warm sun and dayly in the swimming pool. Wim From: jan...@centurytel.net To: wim_from_holl...@hotmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] Date: Mon, 27 Dec 2010 10:31:41 -0600 Wim, it is great hearing from you again!  How are you doing â besides learning to be grandparents. Janice From: wim from holland Sent: Monday, December 27, 2010 9:03 AM To: TMIC Subject: [TMIC] Gelukkig Nieuwjaar!! Happy new year everybody, hopefully this will be the year that makes an end to TM, and if not, don't give up hope and keep the head up. Last two years were very strange. We become grandparents, but we also became orphans this year. Next year our second grand child will be born. Wim from Holland.
Re: [TMIC] RE:too much calcium
The only time I've heard of 5 mg vit D is with chronic kidney disease. And then, it's only prescribed for something like a 6 week period. If you don't have that disease, I'd suggest you ask your doctor to do a blood test to determine if you really need that much vita D. Too much D can cause serious problems, one being that your body absorbs TOO MUCH calcium. Of course, your doctor obviously knows things that I don't, but considering that they seldom have too much nutrition training, I'd sure question such a high dose of D. Sally this is why i asked my Md why i was taking 5 ui of vit D per week when type 2 vit D usually is not absorbed into the body as well as lesser amounts of over the counter vit D. his reply as well as second openion reply,,,scientific studies drive me crazy,,new one every day,,,take the pills, all is a game i reckon. if it feels good do it,,if it makes you feel bad stop,,,if it kills you ,,,thennever mind. --- On Mon, 12/20/10, kale...@sfcn.org kale...@sfcn.org wrote: From: kale...@sfcn.org kale...@sfcn.org Subject: Re: [TMIC] RE:too much calcium To: rn11...@yahoo.com rn11...@yahoo.com Cc: Patricia Cooley patticoole...@gmail.com, tmic-list@eskimo.com Date: Monday, December 20, 2010, 12:53 AM You're right, Cheryl. Thank you for mentioning that. That's why I consider how much calcium-containing food I eat. I also balance it with magnesium, which should be about 1/2 as much as calcium (taking extra magnesium is also particularly good for people prone to kidney stones or constipation). But too much of anything is not good. Going to extremes with supplements - even those considered 'harmless' - can throw things out of balance. Sally Hi, Too much calcium can cause constipation,kidney stones,gas,plaque in arteries,risk of prostate cancer,dry mouth,confusion,dizziness,and even seizures.Too much calcium in the blood can result in calcium toxicity,and can develop into abnormal deposits of calcium in the body's tissues. No vitamin or mineral is without complications if over used. Cheryl in Easthampton,MA --- On Sun, 12/19/10, Patricia Cooley patticoole...@gmail.com wrote: From: Patricia Cooley patticoole...@gmail.com Subject: RE: [TMIC] Gabapentin To: 'Janice Nichols' jan...@centurytel.net, kale...@sfcn.org, 'john snodgrass' jcs...@yahoo.com Cc: 'Dalton Garis' malugss...@gmail.com, 'transverse myelitis' tmic-list@eskimo.com Date: Sunday, December 19, 2010, 3:25 PM I never heard that you get into trouble with too much calcium. I take over 1200 mg a day, but I don't take them all at once. I take one at lunch and one at dinner, plus my multi which has calcium in the a.m. I also take one magnesium tablet in the a.m. It helps to absorb the calcium, but you don't take it at the same time as your calcium. I was under the impression if you take more than you need, you just pee it out which is a waste since they aren't cheap. Plus I drink milk and have milk on my cereal in the a.m. Patti - Wisconsin -Original Message- From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Sunday, December 19, 2010 12:32 PM To: kale...@sfcn.org; john snodgrass Cc: Dalton Garis; transverse myelitis Subject: Re: [TMIC] Gabapentin Sally, what would be too much calcium? I know that if you take too much you get into trouble for other things. Janice -Original Message- From: kale...@sfcn.org Sent: Saturday, December 18, 2010 10:09 AM To: john snodgrass Cc: Dalton Garis ; transverse myelitis Subject: Re: [TMIC] Gabapentin John, I'm not sure what your spasms are like - maybe yours are much worse than mine, but I've found that if I take sufficient calcium supplements, I don't have them. (What I refer to as 'spasms', for me, is when nerves in my legs actually cause my legs to jerk around when I'm still. It makes it hard to go to sleep.) I take maybe 800 mg to 1200 mg/day, depending on how much calcium foods I've eaten. If my legs start to spasm, I know I didn't take enough and get up and take some. (Calcium is more effective if taken in smaller doses - i.e. 400mg - throughout the day, rather than all at once.) My calcium levels were good before I was given the 5000 mg methyl-prednisone to zap the myelitis, but that zapped the calcium, too. So this is likely to be true for all of us who were given steroids to treat the TM. It might be worth it to give it a try. Sally realy bad spasms. it helps some. i thought this stuff made you sleepy. i reckon i am immune. --- On Sat, 12/18/10, Dalton Garis malugss...@gmail.com wrote: From: Dalton Garis malugss...@gmail.com Subject: Re: [TMIC] Gabapentin To: john snodgrass jcs...@yahoo.com Date: Saturday, December 18, 2010, 9:33 AM That is 4x what I am taking! John, do you have paralysis
Re: [TMIC] RE:too much calcium
You're right, Cheryl. Thank you for mentioning that. That's why I consider how much calcium-containing food I eat. I also balance it with magnesium, which should be about 1/2 as much as calcium (taking extra magnesium is also particularly good for people prone to kidney stones or constipation). But too much of anything is not good. Going to extremes with supplements - even those considered 'harmless' - can throw things out of balance. Sally Hi, Too much calcium can cause constipation,kidney stones,gas,plaque in arteries,risk of prostate cancer,dry mouth,confusion,dizziness,and even seizures.Too much calcium in the blood can result in calcium toxicity,and can develop into abnormal deposits of calcium in the body's tissues. No vitamin or mineral is without complications if over used. Cheryl in Easthampton,MA --- On Sun, 12/19/10, Patricia Cooley patticoole...@gmail.com wrote: From: Patricia Cooley patticoole...@gmail.com Subject: RE: [TMIC] Gabapentin To: 'Janice Nichols' jan...@centurytel.net, kale...@sfcn.org, 'john snodgrass' jcs...@yahoo.com Cc: 'Dalton Garis' malugss...@gmail.com, 'transverse myelitis' tmic-list@eskimo.com Date: Sunday, December 19, 2010, 3:25 PM I never heard that you get into trouble with too much calcium. I take over 1200 mg a day, but I don't take them all at once. I take one at lunch and one at dinner, plus my multi which has calcium in the a.m. I also take one magnesium tablet in the a.m. It helps to absorb the calcium, but you don't take it at the same time as your calcium. I was under the impression if you take more than you need, you just pee it out which is a waste since they aren't cheap. Plus I drink milk and have milk on my cereal in the a.m. Patti - Wisconsin -Original Message- From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Sunday, December 19, 2010 12:32 PM To: kale...@sfcn.org; john snodgrass Cc: Dalton Garis; transverse myelitis Subject: Re: [TMIC] Gabapentin Sally, what would be too much calcium? I know that if you take too much you get into trouble for other things. Janice -Original Message- From: kale...@sfcn.org Sent: Saturday, December 18, 2010 10:09 AM To: john snodgrass Cc: Dalton Garis ; transverse myelitis Subject: Re: [TMIC] Gabapentin John, I'm not sure what your spasms are like - maybe yours are much worse than mine, but I've found that if I take sufficient calcium supplements, I don't have them. (What I refer to as 'spasms', for me, is when nerves in my legs actually cause my legs to jerk around when I'm still. It makes it hard to go to sleep.) I take maybe 800 mg to 1200 mg/day, depending on how much calcium foods I've eaten. If my legs start to spasm, I know I didn't take enough and get up and take some. (Calcium is more effective if taken in smaller doses - i.e. 400mg - throughout the day, rather than all at once.) My calcium levels were good before I was given the 5000 mg methyl-prednisone to zap the myelitis, but that zapped the calcium, too. So this is likely to be true for all of us who were given steroids to treat the TM. It might be worth it to give it a try. Sally realy bad spasms. it helps some. i thought this stuff made you sleepy. i reckon i am immune. --- On Sat, 12/18/10, Dalton Garis malugss...@gmail.com wrote: From: Dalton Garis malugss...@gmail.com Subject: Re: [TMIC] Gabapentin To: john snodgrass jcs...@yahoo.com Date: Saturday, December 18, 2010, 9:33 AM That is 4x what I am taking! John, do you have paralysis and spasms? And is that why the neuro has you on such a high dose? Because I would love to be more medicated if I could. Dalton Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760-- From: john snodgrass jcs...@yahoo.com Date: Sat, 18 Dec 2010 06:11:48 -0800 (PST) To: Kevin Wolfthal wolft...@optonline.net Cc: transverse myelitis tmic-list@eskimo.com Subject: Re: [TMIC] Gabapentin Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 18 Dec 2010 06:11:49 -0800 i am taking 2400 mg a day. it helps but it doesn't heal me --- On Sat, 12/18/10, Kevin Wolfthal wolft...@optonline.net wrote: From: Kevin Wolfthal wolft...@optonline.net Subject: [TMIC] Gabapentin To: tmic-list@eskimo.com Date: Saturday, December 18, 2010, 6:12 AM My new doctor visited me today. I asked him again about Gabapentin and he is going to start me on 100mg 3 times a day. For those who take this, I would like to hear how you did on it. I realize it's a low dosage. Thanks, Kevin
RE: [TMIC] Gabapentin
Sorry - I have a new email and they seem to come out of order. I missed this message which must have come before the last one. Generally, 1000 mg/day (under 50) to 1200 mg/day (over 50) is the recommended amount of calcium for adults. Of course, if you're consuming dairy products, almonds, broccoli, and other calcium foods, you're getting calcium there, and that's the best source - assuming it adds up to be enough. But with the steroids that many of us have been given, we need extra to keep our bone density up. I argued with my doctor about taking supplements when he first told me to, b/c I've always had high levels due to my diet. But I did a bone density test and was shocked at the difference in my bone density from before TM and after the TM!) Actually, another good source is weight bearing exercise - that helps bone density, too - among other things. Patti's right about water soluble vitas being peed out! But besides being a waste, an extreme amount of one vita can cause a 'deficiency' or and an imbalance, in another. I.e.: taking extra magnesium as well as extra calcium is more likely to keep the two in balance. So moderation is a good rule. But if I'm going to take a risk, I'd rather risk extra vitamin supplements than extra drugs. On the other hand, everyone's body is different, so 'whatever works!' is my motto. Which is why I like the TMIC - because hearing everyone's experiences helps me to see what the choices - and possible risks - are. Sally I never heard that you get into trouble with too much calcium. I take over 1200 mg a day, but I don't take them all at once. I take one at lunch and one at dinner, plus my multi which has calcium in the a.m. I also take one magnesium tablet in the a.m. It helps to absorb the calcium, but you don't take it at the same time as your calcium. I was under the impression if you take more than you need, you just pee it out which is a waste since they aren't cheap. Plus I drink milk and have milk on my cereal in the a.m. Patti - Wisconsin -Original Message- From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Sunday, December 19, 2010 12:32 PM To: kale...@sfcn.org; john snodgrass Cc: Dalton Garis; transverse myelitis Subject: Re: [TMIC] Gabapentin Sally, what would be too much calcium? I know that if you take too much you get into trouble for other things. Janice -Original Message- From: kale...@sfcn.org Sent: Saturday, December 18, 2010 10:09 AM To: john snodgrass Cc: Dalton Garis ; transverse myelitis Subject: Re: [TMIC] Gabapentin John, I'm not sure what your spasms are like - maybe yours are much worse than mine, but I've found that if I take sufficient calcium supplements, I don't have them. (What I refer to as 'spasms', for me, is when nerves in my legs actually cause my legs to jerk around when I'm still. It makes it hard to go to sleep.) I take maybe 800 mg to 1200 mg/day, depending on how much calcium foods I've eaten. If my legs start to spasm, I know I didn't take enough and get up and take some. (Calcium is more effective if taken in smaller doses - i.e. 400mg - throughout the day, rather than all at once.) My calcium levels were good before I was given the 5000 mg methyl-prednisone to zap the myelitis, but that zapped the calcium, too. So this is likely to be true for all of us who were given steroids to treat the TM. It might be worth it to give it a try. Sally realy bad spasms. it helps some. i thought this stuff made you sleepy. i reckon i am immune. --- On Sat, 12/18/10, Dalton Garis malugss...@gmail.com wrote: From: Dalton Garis malugss...@gmail.com Subject: Re: [TMIC] Gabapentin To: john snodgrass jcs...@yahoo.com Date: Saturday, December 18, 2010, 9:33 AM That is 4x what I am taking! John, do you have paralysis and spasms? And is that why the neuro has you on such a high dose? Because I would love to be more medicated if I could. Dalton Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760-- From: john snodgrass jcs...@yahoo.com Date: Sat, 18 Dec 2010 06:11:48 -0800 (PST) To: Kevin Wolfthal wolft...@optonline.net Cc: transverse myelitis tmic-list@eskimo.com Subject: Re: [TMIC] Gabapentin Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 18 Dec 2010 06:11:49 -0800 i am taking 2400 mg a day. it helps but it doesn't heal me --- On Sat, 12/18/10, Kevin Wolfthal wolft...@optonline.net wrote: From: Kevin Wolfthal wolft...@optonline.net Subject: [TMIC] Gabapentin To: tmic-list@eskimo.com Date: Saturday, December 18, 2010, 6:12 AM My new doctor visited me today. I asked him again about Gabapentin and he is going to start me on 100mg 3 times a day. For those who take this, I would like to hear how you did on it. I realize it's a low dosage. Thanks, Kevin
Re: [TMIC] Gabapentin
John, I'm not sure what your spasms are like - maybe yours are much worse than mine, but I've found that if I take sufficient calcium supplements, I don't have them. (What I refer to as 'spasms', for me, is when nerves in my legs actually cause my legs to jerk around when I'm still. It makes it hard to go to sleep.) I take maybe 800 mg to 1200 mg/day, depending on how much calcium foods I've eaten. If my legs start to spasm, I know I didn't take enough and get up and take some. (Calcium is more effective if taken in smaller doses - i.e. 400mg - throughout the day, rather than all at once.) My calcium levels were good before I was given the 5000 mg methyl-prednisone to zap the myelitis, but that zapped the calcium, too. So this is likely to be true for all of us who were given steroids to treat the TM. It might be worth it to give it a try. Sally realy bad spasms. it helps some. i thought this stuff made you sleepy. i reckon i am immune. --- On Sat, 12/18/10, Dalton Garis malugss...@gmail.com wrote: From: Dalton Garis malugss...@gmail.com Subject: Re: [TMIC] Gabapentin To: john snodgrass jcs...@yahoo.com Date: Saturday, December 18, 2010, 9:33 AM That is 4x what I am taking! John, do you have paralysis and spasms? And is that why the neuro has you on such a high dose? Because I would love to be more medicated if I could. Dalton Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760-- From: john snodgrass jcs...@yahoo.com Date: Sat, 18 Dec 2010 06:11:48 -0800 (PST) To: Kevin Wolfthal wolft...@optonline.net Cc: transverse myelitis tmic-list@eskimo.com Subject: Re: [TMIC] Gabapentin Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 18 Dec 2010 06:11:49 -0800 i am taking 2400 mg a day. it helps but it doesn't heal me --- On Sat, 12/18/10, Kevin Wolfthal wolft...@optonline.net wrote: From: Kevin Wolfthal wolft...@optonline.net Subject: [TMIC] Gabapentin To: tmic-list@eskimo.com Date: Saturday, December 18, 2010, 6:12 AM My new doctor visited me today. I asked him again about Gabapentin and he is going to start me on 100mg 3 times a day. For those who take this, I would like to hear how you did on it. I realize it's a low dosage. Thanks, Kevin
[TMIC] Lyrica
Hi everyone! I haven't been here in quite awhile (on TMIC), but after 5 1/2 yrs with TM, I've finally given in to taking stronger meds. I was given Lyrica yesterday, by my podiatrist, for what he diagnosed as 'sural nerve neuritis' in my foot. He thought it would also help the spacticity (which is probably irritating the neuritis). So I'd like to hear your feedback on Lyrica: if it helps, how much you take, side effects, etc. Thanks, Sally
Re: [TMIC] Hello!
In a message dated 4/26/2006 3:28:22 A.M. Hawaiian Standard Time, [EMAIL PROTECTED] writes: Any idea when the TMers in the UK might receive their copy of the journal please? Can I add to that question: In Hawaii? Sally C.
Re: [TMIC] Re: tmic-digest Digest V2006 #9
In a message dated 4/24/2006 7:56:52 P.M. Hawaiian Standard Time, [EMAIL PROTECTED] writes: Harold, Grace and I have emailed each other for a long time. Suddenly last week my email to her came back to me. I don't know if she has moved - she talked about moving in with a friend in another state - but she hasn't told anyone. The last email I had from her about 10 days ago, she was doing much better after her hospital stay. Hope we hear from her soon. Linda (Bothell, WA) I emailed her last week to see how she was doing, and tell her we would all love to hear from her. I haven't heard from her yet. So I'm a little worried. If anyone hears, please put it on the list. Sally
Re: [TMIC] Chiro
In a message dated 4/16/2006 6:57:19 A.M. Hawaiian Standard Time, [EMAIL PROTECTED] writes: there is absolutely no SSA law saying that you must wait a whole year to reapply for benefits, Sorry, I'm sometimes kinda slow to respond to email. I think what happened was that when I went in tothe SS officeto ask aboutclaiming benefits from my ex-husband's SS, she asked me why I didn't apply for SSDI. I told her, it was b/c my disability wasn't permanent, to which she responded, if it lasts one year, then it's considered permanent, even if you get better later. I will have been out 1 year on May 5th, so that's why I went in recently to start the process. Previously, I was 'sure' I'd be back to work in just a few months. (BTW: I found out that I could claim benefits undermy ex-husband's name, but he's been out of the country and hasn't paid taxes for quite a while (not to mentionhis questionable ethics when he did pay taxes), so even though he's financially very well off,his benefits aren't any more than mine at this point.) As for you having a mild case and that the fatigue will just go away, many don't find that. It seems the doctors think that if you can walk, your case is "mild" and symtoms will just disapear. I think this is exactly where my doctor is coming from. She had worked with TM before, and was great in the beginning, but was so impressed with how fast I regained my ability to walk, that she just assumed (I think) that I was 'all better'. Actually, I found this a little difficult in dealing with other people, too. Maybe I'm just imagining this, but I get the feeling, even from family and friends, that when they see me walking fairly well, and feeling good enough to put some make-up on so I look like I did before, that I they don't really understand why I can't work already! Few people understand that the visible stuff is minor compared with the internal stuff. Sally
Re: [TMIC] Increased Numbness in Legs with walking
In a message dated 4/22/2006 7:55:47 A.M. Hawaiian Standard Time, [EMAIL PROTECTED] writes: For those of you who can ambulate, do you notice increased numbness in your legs the longer you are up on them? I don't recall from back when I was walking more, if it did or not.(I had worked up to about 1 mile.) I kind of regressed from doing too much, and barely walk to the mailbox now, forthe lastmonth. I finally started going to chiropractic, which is slowly easing the pain from walking too much when things were out of alignment. But yesterday when I went, he seemed to do more (too much maybe), and got more movement in my back and hips, but afterwards I felt kind of funny - even light headed, and didn't have the sense to lay down until I felt good enough to leave the office. I had to walk to a store in the next block to buy groceries and then meet the Handi-Van. By the time I got there, my legs,from the kneesdown, were so tight and numb, I honestly thought I was having another attack of TM! Of course, my panic probably made it worse! Later I realized it must have been morerelated to the spacticity, than toa replay of the original attack becauseI didn't lose my ability to walk. But today, they are still numb from the knees to the instep of each foot. And that was the most I'd walked in the last month. Could it be that, for you too, things are a little out of line, and when you stand or walk, it's putting too much pressure on the wrong places? (Who knows - this TM stuff seems to have no rhyme or reason, sometimes.) For me, my left leg was my good leg, and so it had to compensate for what the right leg couldn't yet do. My spine, at my waist, and my left hip paid the price. But I'm confidant that the chiropractic will help resolve things, so I can get back to walking - normally! Does it last long, when it gets numb? Sally
Re: [TMIC] up date on LYRICA
In a message dated 4/20/2006 6:12:44 P.M. Hawaiian Standard Time, [EMAIL PROTECTED] writes: My knees are still GREAT!!! It has been 7 years that they would not bend more then 45 degrees. My energy still seems better then before and I can't wait to get on the full dose of Lyrica. I'm happy to hear this is working for you, Sally! 'Hope it continues to improve how you feel. That's great! I just had this off-the-wall thought: Do you think it'stotally justthe Lyrica that's helping you, ordo you suppose that getting off the Neurontin is also helping? I'm partly joking, but partly serious. I've never taken either, but from what I hear from everyone, there's a lot of sideeffects froma lot of the drugs (as there tends to befrom any drug, to some extent). So it just occurred to me that getting off ofsomething might eliminatesome negative side effects??? Especially if it's somethinga person hastaken for a long time. I don't know. Just 'musing'. Sally C.
Re: [SPAM] Re: [TMIC] Spinal cord/Depression/Panic attacks.
In a message dated 4/16/2006 5:08:55 P.M. Hawaiian Standard Time, [EMAIL PROTECTED] writes: I have MVP.. . So is this somehow related to TM? Even if it is later in life? I don't know, but have wondered, especially since one of the symptoms / results of MVPS and TM is some degree ofdysfunction of the Autonomic Nervous System. Or maybe it's just that if you have both, you get more quirky ANS symptoms? I don't know. AJ: Have you ever checked out the MVP info on the internet? I've found that it pretty muchcovers the things that were in the booklet that the cardiologist gave me when I was diagnosed (at age 50). Nothing 'cures' it, but diet and lifestyle management help tokeep it under control. The thing that helped me most inbeing diagnosed was that I finally learned to trust my own feelings / judgement. Before then, I spent almost 40 years listening to people tell me thatit (whatever quirky symptoms I had) was 'all in my head! Thanks for sharing. Sally
Re: [TMIC] Why Depression with TM?
In a message dated 4/16/2006 10:46:36 A.M. Hawaiian Standard Time, [EMAIL PROTECTED] writes: I agree, but would add that Chronic pain, especially central neuropathic pain, clogs the CNS; our brains work overtime so we use up chemicals in our brain's. This causes both the fatigue and depression. Chronic Fatigue adds ( or subtracts) from our our energies, physical and emotional causing increased depression. Frank, Do you have any inputas towhether or not that would hold true for someone with a 'light case' of TM (the fatigue). When I told my neuro that I don't know how I could possibly go back to work yet (even though I can walk), because I need to sleep 9 - 11 hrs/night, and still move slowly, and need to lie down several times during the day in order to feel ok (I don't sleep, just put my feet up), she said I shouldn't feel that way, since I only had a 'light case'. Sally
[TMIC] Chiro
Thanks everyone who encouraged me to see a chiropractor! I finally went yesterday, and am really encouraged. (My neuro had told me not to go.) I consider myself especially lucky to have found one who is familiar with TM and, in general, open to learning and seems to be making an effort to really help me. I've been in almost constant pain for several weeks due to burning and apparent inflammation in my left hip / lower back. I'm pretty sure it's indirectly from the TM. That is, I think that b/c my left leg was my 'good' leg, it had to overcompensate for my right leg. Add to that the fact that I've really pushed myself to exercise and walk a lot b/c I feel I need to build my endurance to get back to work. I think my body just wasn't ready for it, and I was probably way out of alignment already. (I had actually felt the need to see a chiro for about a month before TM hit, but never got around to it.) I was totally discouraged after my neuro appt at the beginning of the week! She basically told me that since I have only a 'light case' of TM, I shouldn't be still feeling the symptoms that I do! I'm totally aware that I was fortunate to have only a light case, and to regain my ability to walk (though nowhere near normally, yet). But apparently my body hasn't read to book on how I should feel, as it continues to feel fatigue, banding, burning,pain in various places, etc., even though it's not supposed to! (I'm not sure if my neuro was really puzzled or just trying to imply that I'm lazy and taking advantage of an excuse to not return to work yet!) It was really discouraging to me, on top of the fact that she didn't even offer any suggestions on what I could do to improve! So seeing the chiro has really been a blessing! Thanks, Sally
Re: [TMIC] Chiro
In relation to this, I'm curious how many of the problems that TM'ers have, are actually indirectly caused by the TM. For example,is TM really a cause oflowered bone density, or is it just a common thing b/c people with TM are unable to perform weight-bearing exercise, at least for a period of time, if notpermanently? And it seems like several of you have implied that some of the meds you take are not directly for the TM, but for problems that have resulted from the limitations that TMand it'ssymptoms, have left you with. Or even to counteract the side effects of some of the primary meds. Sally (who's curious)
[TMIC] Senna
Does anyone out there take Senna. I was told to take 3 tablets, twice a day, when I was discharged from the hospital last May, tohelp bowel problems. I checked with the doctor,later, and was told that there's no problem in continuing to take them (even though the package warns not to use for more than 2 weeks w/out a doctors orders). However, I recently learned that Senna depletes POTASSIUM! I asked the Kaiser Dietician about it, and she contacted the drug company to find out 'how much it affected potassium', so I'd know how much I should take in supplements. (Potassium can be DANGEROUS to take too much of, but also dangerous to not have enough of!) The drug company responded that they couldn't say how much. I presume they couldn't be held responsible due to their warning on the package. The doctor who said to take more would then be responsible, I suppose. But in the meantime, I'm more than just a little concerned about what effect this could have on those of us who have been taking it for almost a year! (even though I've cut it back by now, to 3 tablets, once a day) Calcium, magnesium, potassium, all need to be in some kind of balance, too! I intend to refer the dieticians findings back to my doctor, but thought I should pass this along to all of you, first. Sally
Re: [TMIC] Spinal cord/Depression/Panic attacks.
In a message dated 4/13/2006 8:30:50 A.M. Hawaiian Standard Time, [EMAIL PROTECTED] writes: Panic Attacks. Have any of you checked out the possibility of Mitral Valve Prolapse Sydrome? Panic attacks are one of the symptoms. I'm not suggesting that meds aren't ever called for, but sometimes you can control them to some extent with nutrition and exercise. I have MVPS, but have never had panic attacks (there are a myriad of symptoms). A common denominator in MVPS is a dysfunctional Autonomic Nervous System. I found it interesting that this is also a 'side effect' of TM! Check out MVPS on the web. Sally
[TMIC] SS disability
My year of leave without pay will be up in June (though technically not until November), so if I can't go back to work before June, I'll lose my position with the state. Since I'm not getting paid,anyway, the only difference it will make is I'll have toturn COBRA for insurance, whereas now, the state is still carrying me, as long as pay my own $120/mo. (med, drug, dental, vision, chiro). The truth is, if I don't go to work by June, I'll have more serious problems than that, b/c, tho I refinanced my house last year, to live on, I thought I'd only be out a few months, and will be running out of money soon. I didn't qualify for TDI - they said since I worked for the state, I already got more sick leave than TDI would give me. So I just nowlooked into SS disability benefits. I had been told that even if mydisability wasn't considered permanent, that if I was unable to work for one year, they would automatically consider it permanent and I couldapply. My main concern was that if I got it, could Ireverse it when I get well enough to work, which I was happy to find out that I can! So the big question is, will they qualify me? Has anyone had any experience with this? As I've said before, I'm not in "that bad" a shape. (T6-T8) I've gotten so I can even walk about 1 mile when I'm feeling good! But that's the key. Some days I'm okay, and others I feel worse if I try to even stretch out, much less exercise or walk! It's like it just turns on and off! The more the numbness diminishes, the more pain I feel, some days to where it makes me feel kind of 'sickish'. And a few times,I've been hit with this dizziness, that also makes me feel like I shouldn't be doing anything other than lying down! And it's so unpredictable, I can't imagine me going to work, until I get past this! I'd love to hear some feedback, here. Do I sound like I'm just being lazy? I know I could work, even if I couldn't walk, as long as I could think, and felt good enough to get ready for work! But often, I don't. And the fact that I seem to still require 9 or 10 hours of sleep doesn't help, either. I can force myself to get up earlier, but it's not worth it, b/c then I just feel like a zombie all day! I'd rather have a short day, and feel good enough to accomplish something when I am up! Thanks for listening, Sally
Re: [TMIC] AOL OT,OT
Thanks for all the info on email accounts. I now pay about $24 for aol unlimited use. But as I'm on leave without pay - and the state may not hold my position too much longer (which will mean I'll need to pay more for my health insurance, too), and no signs of going back to work too soon, I need to really watch it. I already have yahoo, also, but seldom use it b/c it seems so much slower than my aol email. And I still need to pay for internet service with yahoo, anyway. My son,who thinks I'm paying too much for dial-up)suggested I try Netzero ( http://www.netzero.net ). Has anyone heard of it? He said it's only $9.95 mo. I'm always afraid to try new things, esp. concerning the internet, as I'm fairly computer illiterate. He's never tried it b/c he has Roadrunner, or one of those more expensive ones -he wouldn'tmess with dial-up. :) But then he's a well-paid software engineer, who's not on medical leave! Sally
Re: [TMIC] Spinal cord/Depression/Panic attacks.
I'm slow to reply to your email about your panic attack, but was sorry to hear that your life keeps getting more complicated! Enough already, huh! People with Mitral Valve Prolapse (MVP) often get panic attacks, so I've read a bit about them, though fortunately, I've never had to deal with that symptom of MVP. But one thing I do know, is that they are a physical thing, even though they feel like an emotional thing, and consequently can betriggered by physical factors such as the fatigue following a long illness,or certain drugs. Even caffeine and sodium lactatecan trigger them in some people. I hopeyour doctors can help you figure out what triggered your attack so you won't have more! It would be nice if it wereas simple as giving up coffee, so your wouldn't have to take MORE meds! My prayers are with you, Sally
Re: [TMIC] AOL OT,OT
So what do you recommend instead of AOL. Please don't tell me something more expensive. :) But I don't mind changing to something cheaper. Sally
Re: [TMIC] weather and TM
In a message dated 3/18/2006 7:35:39 A.M. Hawaiian Standard Time, [EMAIL PROTECTED] writes: Weird too is the fact that sometimes I am cold when going to bed even after a hot shower but then am up in the middle of the night shedding warm nightwear for a light cotton nightie. What is with all that??? Drives me nuts. I can also wear a fleece sweatshirt first thing in the morning and then a short sleeve t-shirt in mid-day and back to warm wear in the evening. And this is in the winter. Sheesh. Keeps my laundry going crazy. Like someone said on here before our Thermostats are broken. Heather in Calgary Ditto! It seems I wear 2 or 3 outfits a day, which seems ridiculous to me! Sally
Re: [TMIC] Fuzzy Brain
I laughed when I read your 'story'. And the laugh was because I could relate, having done things like that!One advantage (thereshould be at leastone!) of TM is that now I can blame such things on my condition, whereas before, I might have had to admit (heaven forbid!) that it was what some people would call 'old age'.(I wouldn't call it that, simplyb/c I try not to use the 'o' word! :) Sally
Re: [TMIC] Re: Fwd: Fw: save our school children
I agree with this, too, but that doesn't mean that I mind hearing how other people feel, as long as they don't try to convince me that I'm wrong if I don'tbelieve as they do! Sally In a message dated 3/16/2006 1:47:05 P.M. Hawaiian Standard Time, [EMAIL PROTECTED] writes: well, problem is, not everyone is christian...not everyone celebrates GOD, some see allah, buddha, the goddess, the universeetc...so, god may help you make it thru the day, but general faith in oneself may make someone elses. JMHO K[EMAIL PROTECTED] wrote: In a message dated 3/16/2006 5:02:02 PM Eastern Standard Time, [EMAIL PROTECTED] writes: Dear God,It has come to my attention that you have been sending religious matterial to the TMIC.Several years ago the members agreed that you were not welcome here, either. Wow.That's pretty sad. Actually it was my understanding that talk about God in a natural sense as in relying on God's help to make it through the day was all right, because we all talk about what helps us, but general religious e-mails weren't welcome. Barbara H.
Re: [TMIC] weather and TM
I agree with you, Bernie, about the weather affecting how we feel. And I live in Hawaii! But we had several weeks of cold, and I wore sweat suits and 2 pair of socks, constantly. I spent two weeks in Long Beach, CA, with my sister, in Feb, and wore TWO sweat suits to bed, with THREE pairs of socks! So I really empathize with you folks who live in really cold weather! (You have to realize, tho, that all we can do when the cold weather hits us in Hawaii, is to close the windows. We don't have heaters or fireplaces. And when you live here, your blood thins out. I won't tell you the weather indegrees, though, as I'm sure I wouldn't get any sympathy at all! :) I have at times not gone places that I really wanted to go, because I couldn't bear the air conditioning on my feet and legs. Sally
Re: [TMIC] weather and TM
I just replied to Bernie's email, but remembered when I read this one, that I didn't even say what I meant too. :) I read in a book about MS (that was recommended for TMers, too) that we are so much more sensitive to hot and cold, b/csome of themyelin, whichis actually the insulation to the nerve, is missing/damaged, so it only makes sense that we would be more sensitive (unfortunately!) Sally
Re: [TMIC] meds for burning in the feet?
Claudia mentions, 'good luck with your chiropractor." I was told not to go to the chiro, although I normally did, and started feeling like I should again, just before this happened (TM). But I put it off, and couldn't help but wonder if it might not have been better if I had! But I'm afraid to go now, after the doctor saying not to. Anyone have any experience going to the chiro AFTER getting TM? Sally
Re: [TMIC] DR. Weil
I don't know about getting sun from inside, by a window, but I do know thereis some concern about getting too much vita D. I'mNOT suggesting anyone NOT take a supplement, butbe careful to not overdo it. I remember hearing - I think in one of my nutrition classes -about something of concernhappeningb/c adairy had put too much vita D in their milk (D helps your body absorb the calcium). Sally
Re: [TMIC] DR. Weil
You're right on that one, Lynn. It's 2 to 1 - twice as many mgs of Ca as Mg. But when taking supplements, you have to remember that you may get more of one than of another, in the FOOD you eat, so your supplements wouldn't necessarily be 2:1. Sally
[TMIC] sitting by a window
I don't know about getting sun from inside, by a window, but I do know thereis some concern about getting too much vita D. I'mNOT suggesting anyone NOT take a supplement, butbe careful to not overdo it. I remember hearing - I think in one of my nutrition classes -about something of concernhappeningb/c adairy had put too much vita D in their milk (D helps your body absorb the calcium). Sally
[TMIC] Ca Mg
You're right on that one, Lynn. It's 2 to 1 - twice as many mgs of Ca as Mg. But when taking supplements, you have to remember that you may get more of one than of another, in the FOOD you eat, so your supplements wouldn't necessarily be 2:1. Sally
Re: [TMIC] Relapse Steoirds
This may be a stupid question, but when you say 'excess anti-bodies from our system', is that the same as the anti-bodies in our blood? (i.e.: Bloodtype A+ with a positive anti-M anti-body) Sally-Original Message-From: ROBERT COOK [EMAIL PROTECTED]To: tmic-list@eskimo.comSent: Tue, 28 Feb 2006 08:00:29 -0600Subject: RE: [TMIC] Relapse Steoirds Most definitely, stress has been shown to play an important factor in TM for many. You might talk with your neuro about checking the level of protein in your CSF. Bad thing is it requires a spinal tap. This could assist in confirming a relapse or not. If a relapse is suspected, some have benefited from Plasmapharesis treatments to remove excess anti-bodies from our system, which are thought to be the cause of demyelination in many cases. Unfortunately, steroid treatment/therapy is the recommended course. I am not aware of anything to help control the side effects of confusion and associated general malaise feelings. Bob from Houston-Spring Tex Class of 1994 T-1 para BTW, YESTERDAY WAS MY 12 TH ANNIVERSARY WITH TM. YEA FOR ME !!! HIP HIP HURAY ! dANG, AN'T THIS STUFF FUN ? [Original Message] From: C E [EMAIL PROTECTED] To: tmic-list@eskimo.com Date: 2/27/2006 6:58:21 PM Subject: [TMIC] Relapse Steoirds You all are awesome at giving out words of kindness and encouragement. Here is what I am going through and if you have any suggestions, through them my way. June 2005, diagnosed TM. Hospitalized 5 weeks. One week IV steroids, 4 weeks aggressive rehab. Got strong enough to walk again. Beginning of Feb 2006 I started growing weaker. My most affected leg becoming more limp with tighter banding. Met with my neuro, who suggested f/u MRI to look for any changes since June and a Visual Evoked Response Test. The brain MRI showed no change. Which I guess is good since he was looking for MS. But now he says it must must be a relapse of TM.This past weekend, felt like my back was swollen, both legs got worse. I was on an oral dose of Methylprednisolone (Steroid) 250 mg 2 capsules twice daily for 5 days then 1 daily for 5 days, the neuro said that was equal to the IV I had in June. Since I finished this dosage 2 days ago, I became worse. Today my neuro is now putting me back on a steroid, but a different one and a lower dose. Prednisone 60 mg for 4 days, then 40mg for 4 days, and then 20 mg for 4 days. I HATE the way I felt while I was on the Methylprednisolone. I was depressed, food tasted like crap, and overall feeling of exhaustion. I am also diabetic, controlled by Actos, diet and exercise. Naturally, taking the steroids I had to use insulin injections to keep the blood sugar under control. What I would like to do is crawl in a dark room and stay there for the next 12 days. :( AND I have an interview for a new job on March 3rd, cause I got fired from my last one cause I can't keep my thoughts straight and not learning it fast enough. I have NEVER encountered this problem before. Is there anything I can do? What else besides steroids are out there for this monster, TM? How many relapses are probable? I was doing so good and now back to using the walker. Could stress from the job have brought on the relapse. Are there any finding of this sort that stress and TM do not mix? How do I get through the next 12 days of steroids and and interview? How did you all overcome the ill affects of steroids when you were on them? Recap: my concerns of relapse, feeling of sickness and depression and overall feeling of cloudiness while taking the steroids. Carol in Culver, IN T10
Re: [TMIC] Relapse Steoirds
Carol, How the heckdo you WORK? Is it full-time? I was first hit last May, and am walking, etc. fairly well but have such limited endurance. I'm great some days, and others, it's all I can do to take care of myself, especially ifI have an appt. or have to take the bus to buy groceries. So I'm wonderingif your body doesn't just plain need more rest to heal completely? That's my UNprofessional opinion - I really don't know any answers, but that just seems logical. Sally -Original Message-From: C E [EMAIL PROTECTED]To: tmic-list@eskimo.comSent: Mon, 27 Feb 2006 19:57:37 -0500Subject: [TMIC] Relapse Steoirds You all are awesome at giving out words of kindness and encouragement. Here is what I am going through and if you have any suggestions, through them my way.June 2005, diagnosed TM. Hospitalized 5 weeks. One week IV steroids, 4 weeks aggressive rehab. Got strong enough to walk again.Beginning of Feb 2006 I started growing weaker. My most affected leg becoming more limp with tighter banding. Met with my neuro, who suggested f/u MRI to look for any changes since June and a Visual Evoked Response Test. The brain MRI showed no change. Which I guess is good since he was looking for MS. But now he says it must must be a relapse of TM.This past weekend, felt like my back was swollen, both legs got worse. I was on an oral dose ofMethylprednisolone (Steroid) 250 mg 2 capsules twice daily for 5 days then 1 daily for 5 days, the neuro said that was equal to ! the IV I had in June. Since I finished this dosage 2 days ago, I became worse. Today my neuro is now putting me back on a steroid, but a different one and a lower dose. Prednisone 60 mg for 4 days, then 40mg for 4 days, and then 20 mg for 4 days. I HATE the way I felt while I was on the Methylprednisolone. I was depressed, food tasted like crap, and overall feeling of exhaustion. I am also diabetic, controlled by Actos, diet and exercise. Naturally, taking the steroids I had to use insulin injections to keep the blood sugar under control. What I would like to do is crawl in a dark room and stay there for the next 12 days. :( AND I have an interview for a new job on March 3rd, cause I got fired from my last one cause I can't keep my thoughts straight and not learning it fast enough. I have NEVER encountered this problem before. Is there anything I can do? What else besides steroids are out there for this monster, TM? How many relapses are probable? I was doing so good and no! w back to using the walker. Could stress from the job have bro! ught on the relapse. Are there any finding of this sort that stress and TM do not mix? How do I get through the next 12 days of steroids and and interview? How did you all overcome the ill affects of steroids when you were on them?Recap: my concerns of relapse, feeling of sickness and depression and overall feeling of cloudiness while taking the steroids.Carol in Culver, INT10
Re: [TMIC] what seemed to help
In response to Frank, who wrote: "1- Shiatsu has helped me. It causes a lot of pain while being done like any deep massage, but makes me feel much better in so many ways after. My question is, could I get the same effect by having roll a lawn roller (100#) over me for half an hour???2- Kinesio tape? You'd probably get the same effect using Duct Tape, actually duct tape might work better.3- Colon cleansing? Better known as an ENEMA (I am not yelling). I've had several of these during my life- even had an alfalfa sprout/chablis cleansing in southern california. First: The nutrients that our bodies absorb are absorbed in our small intestine ( just below the stomach). Only water is absorbed in the large intestines, and even the highest of high enemas don't get close to the small intestines. These enemas should only be done if you're severely constipated or going out on a "Date" with a southern californian- and then no more than once a week. They will influence your electrolyte balance and could kill you !!!" 1 - "get the same effect by having roll a lawn roller (100#) over me for half an hour???" I know what you mean! The first time I had shiatsu, I thought, I can't believe I'm paying this guy to hurt me like this! But it feels better afterwards, and is ultimately worth it. (It's been kind of funny since the TM, b/c sometimes I can tell he's putting a lot of pressure on a place that needs it, but it doesn't hurt, b/cI still don't have all the feeling back in my right side, and I'm still numb in the spot he's working on! :) 2 - You may be right about the duct tape - I've never tried it. 3 - Colon cleansing does not = enema, though an enema may occasionally be used during a cleanse if cleansing reactions become too uncomfortable. (Such reactions are caused by toxins being released as the herbs begin to work, but before the body is able to expel them.Having anenema, of course,speeds the process of expelling.) The cleanse (that I used)consists ofmultiple herbs (in capsules taken by mouth)that help to soften and remove the acidic plaque, cascara to keep things moving, and additional herbs toprovide supportive nutrition during the cleanse. In addition, psylliumis usedfor fiberand bentonite clay is taken with the psyllium to absorbthe released toxins in orderto lessen cleansing reactions. Probiotics taken after meals restore good bacteriaabsorbed by the bentonite, andensure ahealthy balance of good bacteriawith candida (not good bacteria - which isless easilycompletely absorbed by the bentonite -it tends todo well in the alkaline environment created by eating an alkalinediet). I had previously written: "Thepurpose is to improve the body's ability to absorb the nutrients it needs from the foods that are being digested", to which you responded, "The nutrients that our bodies absorb are absorbed in our small intestine ( just below the stomach). Only water is absorbed in the large intestines, and even the highest of high enemas don't get close to the small intestines." You're right, of course, thus requiring me to refine mystatement, byadding that perhapsthe primary purpose of cleansing is detoxification. Perhaps I also should have referred to this as 'cleansing' rather than 'colon cleansing', asthe cleanse I did waspurported to have a cleansing affect on the whole alimentary tract and I can testify that it did that. The creator of the cleanse I did, would totally agree with you, thatcleansingthe small intestine is even more important than cleansing the colon, which is why this cleanse is designed to cleanse the whole alimentary canal. Nevertheless, every tissue is fed by the blood, which is supplied by the bowel, which is why it can be beneficial todetoxifythe colon. Does that not make sense? This particular cleanse also stressed taking your pH before beginning the cleanse,during the cleanse, and especially before moving on to a stronger phase,to be sure electrolyte balance was not impaired by the cleanse. As far as I know, an enema aloneis not a very efficient wayto'cleanse' in the sense of removing acidic plaque, though I thinkin the early 1900's cleansing did consist onlyof enemas and colonics, along with healthy diet. I wouldthink that an enema wouldonly removethe plaqueif it had already been loosened and ready to expel along with normalwaste.Loosening and removal ofthe plaque, I believe,ismore efficiently done bythe cleansingherbs. Sally (Whoa! Am I getting a little carried away with this! Sorry about that. I seem tohave this thing aboutexplaining things . . . )
Re: [TMIC] dizziness
This is interesting! I NORMALLY have really LOW BP, but last time I went to the doctor it was wayhigher than normal, for me, though the nurse said not too high to be safe. Grace wrote and said maybe it was HIGH BP that was causing the dizziness. She said hers went up after getting TM. And now, you're saying that after TM yours is lower! (I'm getting the feeling that this is normal for TM -a myriad of quirky symptoms, and not all the same!) But you also said that it's usually after you eat, and this is what I experienced the other day! Hmmm! Maybe I need to check my BP more often. Thanks for the feedback. Sally PS FYI: Before TM, I found that drinking plenty water increased my BP so I didn't pass out so easy (usually at the sight of blood :) This might help you. Also, I made a note to myself to see if I'm not drinking enough water now.
Re: [TMIC] dizziness
Oops! Sorry. It wasn't Grace, it was Lynn that said her BP went up after TM Sally
Re: [TMIC] Fw: Lesions/ map of the spinal cord regions
I agree Grace, that we need to be proactive. I'm just learning that. I think my generation, at least, grew up with the feeling that doctors were all 'good' and all knew 'everything' and we didn't question! But not only could they not possibly know everything, but even with all their medical knowledge, there's one thing they can't possibly know - what it's like to live in our body! We're the only ones that know that, which is why I agree with you that we need to know whatever they find out about our bodies, because we're the only ones that care enough to take the time to put all these 'clues' together, and try to come up with some answers. I think this is one of the values of TMIC - we each share what we have learned (including the questions), and together we have enough 'clues' to help put the big picture together. That alone may not cure us, but at least it helps us to see the big picture better, so we can make better decisions and learn to better live with what we have to work with. I'm just getting ready to 'demand' to see all the results from all the tests they did in the hospital, and expect them to give me a hassle about it. I have to keep reminding myself, it's MY body they tested, and MY insurance that paid for it! BTW, Grace, I've read a lot of the old messages (before I signed up) and saw a lot of what you've gone through! Hang in there! It reminds me of the saying "What doesn't kill me, will only make me stronger!" I think you're doing great, considering what you'vebeen through, and my prayers are with you - and all the Tmers! Sally
Re: [TMIC] an excellent reference
Dear pHran3que (witha silent 3), If you really want to know, the pH of alcohol is reported to be 5.5. Hopefully that will work well with your setting reset box that youhave plugged into yoursystems preference interface would not recommend doing this before changing various settings in your kidneys, adrenal glands and hypothalamus. In order to accomplish this you need a setting reset box that plugs into the systems preference interface that must be installed by a neurosurgeon qualified and certified by the Organ Settings Corporation based in Belgium. I understand that this corporation and the University of Wisconsin will be given a patent for "Stem Cell Therapy" in the near future.
[TMIC] (no subject)
Rats! I accidentally hit 'send' before I was done with my message! I'll try again - - - Dear pHran3que (witha silent 3), If you really want to know, the pH of alcohol is reported to be 5.5. Hopefully that will work well with your setting reset box that youhave plugged into your systems preference interface. For the rest of us, though it might not be so good. I also wanted to ask why you haven't asked your friends in Belgium, if they can do all that, why they can't do something to maybe dissolve the troublesome lesions, therebycausing the spinal cord to return to normal? Let us know. And do you think our insurance will cover the cost? Sally (who enjoys your humor to keep her from taking herself too seriously)
[TMIC] Re: Nutrition
Patti, I didn't mean to ignore you this long, but honestly, b/c I was so interested in your reply, I wanted to save it for when I had more time to answer. But let me clarify something first: As for the foods that you like, that I said are acidic, please understand that no one says you shouldn't ever eat them. It's just that you need to keep a BALANCE between the acid and the alkaline foods. Most of us naturally get more than enough acidic foods, so we need to concentrate on getting enough alkaline food! The only time you should 'never' eat them is if you're trying to do a 'cleanse', which is basically a 2 to 4 week period where you eat ONLY alkaline foods and usually take supplemental herbs, in an effort to'clean out' theacidic plaque that accumulates in your digestive system from years of eating too much acidic food with too little alkaline food. That acidic plaqueis toxic and tends to block absorption of nutrients so that your digestive system doesn't work very efficiently. My personal belief is that this is why wetend to crave things, over-eat, and gain too muchweight - because even though we're eating,we are not able to efficiently absorb all the nutrients we need, so our body keeps craving more. Now to respond to your other questions: I would assume that pH level would have been part of your blood work. However, I just found an article that said: "medical tests for pH level are usually a reference of the blood pH level. . . . however, saliva pH measurement is more accurate." Through a recent discussion withBill, hehas helped me to understand this, and the reason for it. The blood HAS to be within a certain narrow window for you to stay alive, and therefore blood pH is buffered by both the respiratory system and the liver, to stay within those limits. Consequently, blood pH shows your pH level after it has been 'adjusted' shall we say, by those two systems. Saliva pH indicates your body's 'true' pH before that adjustment. A blood pHreadingwould bekind of like taking a test, but not getting it back until someone had changed all your wrong answers to right answers so you can't see what you got wrong. Then they don't tell you that they still graded you on the answers you got wrong. So you don't know, until it's too late, where you stand in the class. (i.e.: even though the respiratory system and liver 'fix' the blood pHto be 'correct', you 'pay' for it, as this causes more stress to those two systems, only you don't realize it until they start to break down and then it's too late to do anything about it.) You can buy a roll of pH tape from the drug store or health food store (about $13.00), or even Amazon.com. Be sure you haven't eaten for 2 hours before you check your pH. If I understand it all correctly, pH is actually a measure of your level of electrolytes, so I would think that would mean you had a pH test. Whether it was blood or saliva, though, I don't know. You said 'My bone density tests showed improvement'. I wondering now! I was just told by the radiologistthat loss of bone density is irreversible, which I didn't know before! Are you sure it was bone density or was it calcium level? I don't mean to question you - I'm just trying to get it straight here. I hopebone density can improve,b/c I was just told thatmy bone densityis worse than 2 years ago,and that once it gets worse,the damagecan never be reversed! Hmmm? You said that you think your TM is a result of stress. Stress causes a physical reaction, which also can actuallycause acidity! Soyou may be absolutely right. I'm sure it's a factor. Good luck in your healing! Sally
Re: [TMIC] Body Ph
Krissy, You acked: "so, do we want or not want our bodies to be acidic with this? And how can we find out our levels?" Being acidic usually leads to disease. What you want is a balance closer to neutral, or slightly alkaline. To be sure I didn't give you any misinformation, I did a search, and typed in 'ideal body pH'andfound this statement: 'The idealtarget isa 7.0 pHwhen measuring your saliva upon rising in the morning, before eating or drinking anything." 7.0is neutral, meaning neither acidic or alkaline.Ideal blood pH is slightly alkaline, 7.35 - 7.45. but that's slightly different b/c that's after the respiratory system and kidneys have already buffered body pH. That reading won't tell you too much about how you're eating. To measure your saliva pH, use pH paper from a health food store, or order from someplace like Amazon.com. When I did the search, I found one ofthe sites had 'pH sticks' you could order for less than what I've paid for pH paper (~ $8 as compared to $13). (I purposely told you what to search for rather than giving you a site, because they all seem to be sellinghealth food productsand I didn't want to sound like I was endorsing any particular company.) One of the sites suggested "4 parts alkaline to 1 part acid" when choosing food for your diet, if you want to come out with a healthy pH. That's pretty much in line with what I've heard before. But then if you're already terribly acidic, then you'd want to eat even more alkaline, until you reached a balance (or vice versa, but that's rare). I think this was also the site that had a really good chart on what foods were acidic and which were alkaline, etc. Good luck, Sally
[TMIC] Nutrition suggestions
The following is part ofmy response to an email from Grace. I though others might be interested in some of this, so have copied it here to send to all. Please keep in mind, these are just suggestions that work for me. You have to consider what feels right for you: Now, I don't know what will help you, but let me share with you some of the things that I've done. I can't say if it will help you or not, but extra natural nutrients never hurt anyone! 1 - The first thing I did in the hospital, once I realized I might go totally numb (which I didn't - but I got scared!) I called my daughter who understands a lot about good nutrition, and asked her to make me some vegetable broth. When your body is not well, and needs to heal, you need all thegood nutritionyou can get. When you're healing, that takes energy, and sometimes when you're really sick, it's better for your body to not have to waste energy on digesting food. (This is NOT to suggest thatbroth is always better than plain food! I'm suggesting broth for short-term situations. Currently, I still make broth when I can, for in between meals or for when I'm not feeling too good, but most of the time, I still eat regular meals.) BROTH: The main recipe calls for 3 quarts water, 3 med to lg potatoes, skins on, 3 stalks cut celery, and1 or 2 large leaves of any greens (collard, mustard, kale, etc. OR 1/2 bunch parsley). I also add a little onion, a couple fresh garlic cloves, carrot, or any other veg I have. I also usuallyadd 1 or 2 T whole grain barley. Bring to a boil, and simmer. Basically, I cook the heck out of the veg's. Then strain everything out of the broth, throwing all the solids away, and drink the broth. This is a very ALKALINE drink, which is why it tends to be healing. I know this sounds wasteful, but I look at it like this:it's cheaper than meds or even vitamins! Sometimes I've saved the veg, and served them w/a little melted cheese on top, and maybe some chopped chives on top, too. But remember, you've cooked most of the vitamins out of them. YOU drink the broth that's left, which has all the nutrients, but will not use up a lot of energy for your body to digest. 2 - If you have (or can borrow) a juicer, make fresh vegetable and fruitjuices. It's humbug just b/c of the necessity of cleaning the juicer each time (and may also seem wasteful - same applies here as above)! But again, a lot of nutrients, without taxing your digestive system! My favorite (not necessarily for taste, but for making me feel good) is 3 stalks of celery with 1/2 a cucumber. Add a little parsley, if you have some, or a little carrot. Apple is good, but if you're at all sugar sensitive, use tart apples and dilute with water. The same for straight carrot juice, which has a high glycemic level (as do fruits, which is why I prefer veg.) Again, this is very alkaline. 3 - I'm not telling you to drink juice and broth INSTEAD of food (unless maybe you just don't feel good enough to eat), but maybe try to substitute the drinks for any snacks you might have. Or just drink them in between meals. You have to listen to your body here, and see what feels right. 4 - For your meals, I'd suggest mostly fruits and vegetables, fresh if possible. Many people push for organic, which I'm sure is better, but not always easy to find, and often very expensive. I'mNOT at all against eating meat, dairy,and grains, but most of us get plenty of them. When I feel the worst (especially the banding), I feel better if I eat only fruits and veg (and alkaline grains)for awhile. I think one reason is because they're more easily digested and pass through the body more quickly. Since things don't 'move' like they used to before TM,this makes sense to me. Again, you have to listen to your body. 5 - Another reason this helps meis because fruits and vegetables are (almost all) alkaline. Your body needs a balance of acidic and alkaline, but most peopletend to eat more acidic food (meats,junk food,breads). Many nutritionists feel that over acidityleads to alldisease.The ideal is aPROPERBALANCE between acidic and alkaline, but if we're already sick, chances are, we need more alkaline. If you really want to know, you can buy pH tape, and check yourself first thing in the morning, before you eat anything. Or at least 2 hoursafter a meal. 6.0 or below indicates a seriously depleted electrolyte condition. 6.1 to 6.3 indicates depletion, but may not be serious. 6.4 to 6.8 is good. 6 - the food pyramid is a good general guide to healthy nutrition. 7 - one more easy thing: I try to start the day with a large glass of water, with a squeeze of a 1/4 FRESH lemon or lime in it. This is easy, and said to be cleansing. Also alkaline. I could say more, but will stop here, for now. No, I'll add one more thing! This looks really good in print, but I'd be the first to admit, that it often takes all my energy just to do these things. Making broth, fresh
[TMIC] acidic / alkaline
Hi Jude, I just sent out a long message regarding nutrition. I hope it will be helpful. Also, for acid/base (alkaline) foods, check out the following: www.thepaleodiet.com/acidbase.htm www.ccone.com/nh1/alkdiet.html www.ctds.info/acidic-foods.html And we share a common trait - Breyers! (You might be comforted to hear what one of my nutrition profs used to say: "All things in moderation - including moderation!" I think that gives us license for a little (or a lot of ?)ice cream now and then!) And congratulations! At least you throw in some veggies with your nuts and popcorn! :) I always try to warn people that I'm not an expert on what THEY should eat, but one thingI will say that I think holds true for everyone: It's not what you eat that hurts you so much as what you don't eat! If youeat what you should to get the nutrients you need, the other 'extra stuff' isn't likely to do much worse than to put on some extra weight.Keep in mind,if you're eating all that nutritious stuff, you won't be hungry for TOO much extras. On the contrary, if you only eat the extras andare too full for the things your body needs, then you lose . .. Take care, Sally
Re: [TMIC] Sally/Body Ph
Bill, I may have found the key to our difference, here. As a paramedic, I’m sure you know what you’re talking about. In the long run, these details may not be important to anyone else, but my curiosity demands a resolution. J See if this makes sense to you: My physiology test says: “plasma pH is maintained within a very narrow range (7.35-7.45) through numerous mechanisms. Acids in the blood are buffered by bicarbonate in the plasma, and blood pH is maintained by the actions of the lungs and kidneys. . . . .” (italics added by me) I think this is basically what you described in your first email about pH and the respiratory system. I think what all this is inferring is that the blood HAS to be maintained within that limit, supporting your statement that 6.8 would cause death. Notice, it mentions numerous mechanisms, but none of them were diet! I think this is showing why diet is (indirectly) so important, b/c if the body becomes too acidic, the lungs and kidneys have to work even harder to maintain that (narrow range of) balance in the blood. At the same time, another paragraph in the book talks about pH differences between 2.0 and 9.8, in various body fluids, noting that fluids in the digestive tract show a wider variation of pH than other body fluids. ‘The digestive tract’ includes saliva, which to my understanding, is how body pH is measured. But maybe I’m making too many assumptions here. What do you think? ***I also realized another important fact, reflecting on your comments and that first paragraph. I had forgotten to mention STRESS (physical or emotional) as being another contributor to the acidity in the body. I wondered how factual that info was until I thought about the respiration info – when we’re stressed we breath less deeply, thus affecting the CO2 / 02 balance, which again is going to cause the body to work harder to keep the blood pH within a safe range! I’m not explaining it very scientifically, but it makes sense, don’t you think? Sally
Re: [TMIC] OT This is a True Story....oh so true
Thanks for sharing. I'll forward this to my office. I'm a CPS social worker on the west coast of Oahu (when I'm not down with TM), in Hawaii. This area has the highest 'ice' (crystal methamphetamine) use in the nation! About 98% of our cases are drug related. Children are neglected - and worse - because their parents are hooked on 'ice'. And the poem is right - a lot of people only need to try it once to get hooked! Sally
Re: [TMIC] stiffness and regression? bladder infections, UTI's - OJ IS ALKALINE!
To Robert Cook(Bob in Houston-Springs, TX.) - and anyone else who's interested: What you say sounds logical, but ispartially incorrect. Yes, the urine needs to be acidic, but NO, and yes, OJ is acidic, but orange juiceis NOT acidic in the body. Citrus fruits/juices are some of the main things you eat/drink to make your body ( urine)more ALKALINE. It sounds strange, but as the food is metabolized by the body, it leaves an ALKALINE ash,and consequentlyhas an alkalizing affect on the body. This is true of most fruits and vegetables. Cranberries are one of the few exceptions. Vitamin C, on the other hand, I believe,is usually acidic unless it's buffered, because of the ascorbic acid init. However, the acidity of vitamins is one thing I'm still seeking to verify, and haven't been able to findmuch on. I, too, thought this sounded strange, and therefore it was one of the first things I sought to verify when Istarted my degree in nutrition. My prof explained that though it's acidic outside of the body, it's effect on the body is alkalizing. Sally PS: ALKALINE foods are generally very good for the body, though, especially when healing, because most people are over-acidic, and many think that being over-acidic leads to disease. I agree, and feel that my eating mostly alkaline foods,especially since the onset of my TM,has contributed to my healing. (I maywrite more on this later if anyone is interested.)
[TMIC] self-correction - OJ IS ALKALINE
Sorry. I just sent out this email, but didn't re-read after re-writing this line: "Yes, the urine needs to be acidic, but NO, and yes, OJ is acidic, but orange juiceis NOT acidic in the body." It should read: Yes, the urine needs to be acidic, and yes, OJ is acidic, but NO, orange juiceis NOT acidic in the body. Sorry about that, Sally
