[TMIC] OT OT - questionaire for people with TM
*Please fill out the following questionaire honestly and return to me as soon as possible. All of these question are about life before TM. Please answer yes or no next to each item below. Thanks folks. Peace, Bernie _Did you experience any of these symptoms on a regular basis? Nervousness Irritability Difficulty Sleeping Hair Loss Bulging Eyes Unblinking Stares Goiter or Swelling of the Neck Glands Rapid Heartbeat Increased Sweating Heat Intolerance Unexplained Weight Loss Scant Menstrual Periods Frequent Bowel Movements Warm Moist Palms Tremors of Fingers Osteoporosis_* begin:vcard fn: If you help only one soul to find itself, if you comfort only one mourner, if you heal only one sick person, then the whole of your earthly life is justified. How privileged you are to be aware of the tremendous power that is around and about you, that enfolds you, guards you, directs you and ensures that you will continue to unfold your latent divinity and the gifts which are your cherished possession. n:; If you help only one soul to find itself, if you comfort only one mourner, if you heal only one sick person, then the whole of your earthly life is justified. How privileged you are to be aware of the tremendous power that is around and about you, that enfolds you, guards you, directs you and ensures that you will continue to unfold your latent divinity and the gifts which are your cherished possession. adr;dom:Apt. #203;;1941 Gaston Place Drive;Austin;Texas;78723 email;internet:[EMAIL PROTECTED] tel;home:512-926-5475 note:Thomas Jefferson said it best,--Those that trade freedom for security deserve neither freedom nor security x-mozilla-html:TRUE version:2.1 end:vcard
RE: [TMIC] New Address...please add to your address book
My MRIs and taps don't show TM either, they say my problem now is scar tissue in the spinal column BERNARD BUTCHER From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Saturday, March 03, 2007 12:13 PM To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] New Address...please add to your address book Hello Everyone, I have not been on line for about a month. I am so sorry to hear the stories about the pain, numbness and other problems that many of you are having. Hang in there it has to get better!! Refresher: I was diagnosed with TM from the head of Neurology at Temple Hospital in Philadelphia at the end of Oct. 2006. I believe he felt it was TM through process of elimination. All of the doctors there at first felt it was an AVM. But after two angeograms the AVM was never found, therefore TM. PS: My MRI and spinal tap did not show TM!! On January 31st I had an appointment with Dr. Greenburg at Johns Hopkins in Baltimore. As of today I do not think he believes that I have TM. He too thinks I have an AVM and that the doctors at Temple missed something. Since Jan. 31st his team, Neurology, Radiology, Neuro-surgery, etc. are still reviewing my films and CDs. I was supposed to hear from Dr. Greenburg last week. Nothing yet. But I am being patient. My symptoms are still the numbness from the waist down to my toes. Paying special attention to my feet, thighs and butt. The worst is the inability to urinate on my own. I have not gone on my own since Sept. 21st when I entered the hospital for a 6 week stay. Now I am cathing 4-5 times a day. I am not in any pain other than the bottoms of my feet and my but when I sit on a hard surface too long. I work out in my basement at least five times a week. I am stronger but not better! I don't think my friends understand that. They see that I can walk now with a cane. Sometimes without the cane. (Short distances). They look at me and say I look great and it is hard for me to make them understand that I am numb from the waist down 24/7. And I am tired of explaining it! I hope Dr. Greenburg calls soon with some answers. Not knowing is difficult. Everyone take care and keep fighting!! Mark Marlton, New Jersey ** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
[TMIC] GABA
Hi I haven't posted in many months but I read your comments several times a week. I'm having sleepless nights and lots of pain especially my feet and spasms in my legs. Sometime when I drive I get spasms and that bad. I'm on no meds except over the counter because my neuro still says your problem is your diabetes, get it under control and you will be ok. I had none of these problems until TH. My family dr says it's not diabetes related but won't prescribe because I see the neuro. Can't afford to travel far to see another neuro and don't know of one that really treats TM related problems. I stuck between a rock and a hard place. I've been reading about GABA on here. Where can you purchase it and do you just ask for GABA? Willing to try anything at this point. Wishing you sunny days and less pain. Marie.chestnutrose
RE: [TMIC] RE. Handlying TM
Hey Ken, Good to talk with you again. I've had TM for over 30 years now. I was diagnosed in Sept. 1974. My TM story is located in the TM archives whichis at the TM web site. I think it is #304 I had forgotten about the archives until the other day and went back to read several folks stories. It sure is amazing how some of us have been able to make it. This is such a strange disorder! I live just about 90 miles south of Bristow on highway 99 in Ada. I am sorry to hear about your wife. It sure is hard when both partners need help. My wife broke her leg not to long ago and it was a struggle to get through it. But alas we made it with a little prayer and a lot of patience. I feel your pain my friend. I do my best to cope with mine. I too have tried the painclinics and was never really satisfied with what they tried. I do take an anti-depresent (cymbalta) which I think helps me cope with the pain. Yesterday was one of the worst days I have had in a long time. When I got home from work all I could do was go strait to bed and lay curledup on the bed. Today is much better. No leg or back pain as of yet. I am off work today and plan on doing some work at the house and in the yard. It is going to be a beautiful day here so I better let you go so I can go out and enjoy it. Larry in Oklahoma where I still have four puppies left and they are sooo cute but growing fast. From: "Kenneth Oliver" [EMAIL PROTECTED]To: [EMAIL PROTECTED], tmic-list@eskimo.comSubject: [TMIC] RE. Handlying TMDate: Tue, 06 Mar 2007 22:54:16 -0600 Hi Larry, Nice to hear from you. How long have you had TM? Any time at all seems too long. This past year my wife fell and hurt her shoulder and had surgery four months after the fall she was having theapy before and after surgery. It gets a bit of problem some times to be both patient and care giver. We had a lot coming and going with nursing, pt, and home help. I'm glad you have a handle on the pain. I am thankful that I don't have the constant pain that I had for so many years. Now with spring here if I get hurting too much I wheel my self out to the yard and do everything from lawn mowing and gardening from power chair. The sunshine and fresh air helps relieve the pain. Where doyou live in Oklahoma. We lived in Bristow for four years, and liked it very much except forbeing in tornado ally. Some have been talking about pain clinics, I tried one and allhe was concerned about was treating mood swings. One month it was buspar and the next paxil, I got disgusted and dumped them down the toilet. Keep looking up there are a lot of sunny days ahead. Ken in Central Texas Find what you need at prices youll love. Compare products and save at MSN® Shopping.
Re: [TMIC] New Address...please add to your address book
Not knowing is so frustrating although you don't want a worse diagnosis than you already have! Today I am going back to Temple Hospital in Philadelphia for a urodynamic(sp) test on my bladder. Has anyone ever had one? What should I expect? Mark Marlton, NJ ** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
Re: [TMIC] Urodynamics test
When I had mine, first they had me go to the bathroom and empty my bladder as much as I could. Then they cathed me to see if there was any urine left, to see if I was retaining any. Then they put sensors all over my nether regions so they could see which muscles were working, filled my bladder with water, then had me sit on this special chair with a hole in the seat and what looked like a big measuring bowl with measurements marked on it underneath. Then I was supposed to try to urinate, and the sensors made this little graph to show what was working and ho the flow was going (I tend to have a stop and start pattern rather than a steady flow), and the measurements in the vessel underneath let them know if as much was coming out as they put in, again, to see if I was retaining. At some point, I can't remember if it was before or after or in a separate appointment, the urologist did a physical exam. Overall it wasn't fun, but it wasn't horrible. Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 3/7/2007 10:15:43 AM Eastern Standard Time, [EMAIL PROTECTED] writes: Not knowing is so frustrating although you don't want a worse diagnosis than you already have! Today I am going back to Temple Hospital in Philadelphia for a urodynamic(sp) test on my bladder. Has anyone ever had one? What should I expect? Mark Marlton, NJ BRBRBR**BR AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
[TMIC] Fw: Looking for someone
Hi Everyone, Some time ago I sent an email to the list looking for any info on Dennis Galvin. Well Debbie found what I was wishing would not be true. Here is the link if you would like to read it. Dennis was a good friend who helped me in many ways. He had so much to give.I will miss him. Wendy Hi Wendy, I have been doing more research and I am very sorry, really very sorry to have to tell you that your instincts were right. I finally found the obituary for Dennis. Hopefully these links will lead you to it: http://www.rgj.com/obits/index.php?id=18324 http://www.rgj.com/obits/index.php?id=18312 If you want to share your feelings with the list, you can forward that link for the people on the list to see. Take care, Debbie - Original Message - From: Neil Wendy To: TMA/Deborah Capen Sent: Tuesday, March 06, 2007 4:31 PM Subject: Re: Looking for someone Hi Debbie, Well no luck finding Dennis. I am sure something happened to him, his phone email are no longer in service. We were good friends, I wish I had his family's name number. Now that I think of it , it's to late. I wish I could have found out what happened to him. He was so much help to me. I'll miss him. Wendy
Re: [TMIC] Fw: Looking for someone
I am so sorry to hear this. It seems like the last I remember hearing from Dennis on the list, he was about to go to the hospital for some procdeure, but I don't remember what it was. He was always a friendly voice here on the list. We will miss him. Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 3/7/2007 12:29:12 PM Eastern Standard Time, [EMAIL PROTECTED] writes: Hi Everyone, Some time ago I sent an email to the list looking for any info on Dennis Galvin. Well Debbie found what I was wishing would not be true. Here is the link if you would like to read it. Dennis was a good friend who helped me in many ways. He had so much to give.I will miss him. Wendy Hi Wendy, I have been doing more research and I am very sorry, really very sorry to have to tell you that your instincts were right. I finally found the obituary for Dennis. Hopefully these links will lead you to it: _http://www.rgj.com/obits/index.php?id=18324_ (http://www.rgj.com/obits/index.php?id=18324) _http://www.rgj.com/obits/index.php?id=18312_ (http://www.rgj.com/obits/index.php?id=18312) If you want to share your feelings with the list, you can forward that link for the people on the list to see. Take care, Debbie BRBRBR**BR AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
Re: [TMIC] GABA
Marie, I'm the one that suggested it - my pharmacist recommended it. He also recommended that I order it online, which is cheaper. (I'm sure you could get it at a heath food store, though.) I too had terrible trouble sleeping, which is why I tried the GABA in the first place. For awhile there, I was staying awake for two days in a row about once a week. I was turning into a real zombie! But then if I took drugs to sleep, I didn't feel 'right' during the day - I was spaced then too. The pharmacist told me I could take just a little of 2 different things so I wouldn't have such a 'hangover' during the day, and I found 1/4 GABA Calm and 1.25 mgs melatonin to work good. However, I found that if I took it for too many days in a row, I got too relaxed. But then, I'm very sensitive to meds. So be careful, listen to your body, and check w/your pharmacist before you combine anything you're not sure about. Here's the 2 places that I've ordered from. The orders from have arrived in Hawaii in 4 or 5 days, regular shipping, so I would think it would be faster on the mainland. www.vitacost.com/Source-Naturals-GABA-Calm-Orange-Sublingual has 60 sublingual tablets for $8.15. I think there shipping on the mainland is a flat rate of $4.99, which makes it much more worth it if you order several things. www.betterlife.com/prod_list.asp? (the '?' is supposed to be part of the address, but won't highlight - but it might work w/out it) For 60 tablets (same brand) they charge $9.59, and have a $5.00 shipping charge. But they also offer different sizes - one is 30 tablets for $5.10, if you just want to try them w/out buying so much. (I usually go with this company because the other one charges me an extra $5 to ship to Hawaii.) Of course, on the mainland things are cheaper, so you might be able to find them in a store and not need to pay shipping. But what I've ordered from VitaCost has been about half price compared to the stores here. On the other hand, if I'm only ordering one thing and they charge me $10 to ship to Hawaii, it's cheaper to pay the store price - it depends on how much I'm ordering and who has what I need. Good luck, Sally
RE: [TMIC] New Address...please add to your address book
Interesting. This is related to something I've wondered about: If 'TM' is 'inflamation of the myelin', which of course we've already been treated for, then do we really still have TM? I was treated with 5,000 mg methyl-prednisone during the first 5 days after my sudden (with-in 30 min) paralysis on my right side below my rib cage. My understanding was that the treatment completely cleared up the inflammation. So what I'm really dealing with is not TM, but the SIDE-EFFECTS OF TM (nerves that have been damaged), as well as the SIDE-EFFECTS of all that methyl-prednisone! Isn't that correct? Sally
[TMIC] Do we really (still) HAVE TM?
Interesting. This is related to something I've wondered about: If 'TM' is 'inflamation of the myelin', which of course we've already been treated for, then do we really still have TM? I was treated with 5,000 mg methyl-prednisone during the first 5 days after my sudden (with-in 30 min) paralysis on my right side below my rib cage. My understanding was that the treatment completely cleared up the inflammation. So what I'm really dealing with is not TM, but the SIDE-EFFECTS OF TM (nerves that have been damaged), as well as the SIDE-EFFECTS of all that methyl-prednisone! Isn't that correct? Sally
[TMIC] How much do meds help - or hurt? A Theory
James, I already thanked you for your question about GABA, but I want to do so again! Because in writing the explanations, it made me think of something that has helped me. I have this picture in my mind of a toddler trying to learn to walk, but of course he keeps stumbling and falling down. The parent gets impatient with him and yells at him saying, If you can't walk without stumbling, just don't walk at all! So of course, the child never learns to walk, b/c he was never allowed to practice until he could do it perfectly! I have wondered if meds that relieve nerve pain don't work in a similar fashion. Our nerves have been damaged by the inflammation of the myelin in our spinal cords. Now they are struggling to 're-learn' how to fire. In doing so, they are making a lot of mistakes - they over-fire a lot, giving us weird, irritating, and sometimes just plain painful sensations. So we grab a pill, saying to our damaged nerves, If you can't fire correctly, then just don't do it at all! So they stop firing and they never get the practice they needed to become strengthened enough to eventually re-learn how to fire correctly. Okay. I may be way off. Or if I'm even close, this is surely an over-simplification. And the real problem would still come for those people for whom the pain is just unbearable. But I still wonder if STOPPING the source of that pain is really beneficial to our healing??? So when you asked me about GABA, I remembered my little theory, and realized that if there's any truth to it, GABA would have the same effect as meds. However, it would be better in one way - it's not so dangerous as it is with meds, to increase and decrease the dose, ourselves, in order to find the minimal amount needed to be helpful to us. As for my own problem, about the time I answered the question, I was wondering to myself why, when a few weeks earlier, my legs seemed to be getting more feeling, and healing a lot, they were now (then) seeming to get more numb again and I was feeling way less functional, physically. Then I realized that I had been increasing my GABA from 1/4 to sometimes 3/4 a day. (You have to note here, that I'm super-sensitive to meds - I can usually take about 1/6 of what is prescribed.) Anyway, when I realized that, I cut back, and started getting more of those weird nerve feelings - but then my legs seemed to improve and I can walk better again! And in thinking back, I also remember a night when I hardly slept for all the nerve pain. It was pretty discouraging, but then I was surprised to find that the next day, even though I was sleepy, I could walk so much closer to normal than I ever had since I got TM! Let me know what you think here. Sally
RE: [TMIC] New Address...please add to your address book
Yes, that is my understanding, the scar tissue is my problem now. I even asked my neuro: is it now - what I see is what I get? she said yes, we can only treat the symptoms now, can't go in there to fix anything, or more damage would occur. In December of 2005, after my hospital stay, I was put on oral prednisone, 40mg/day for 30 days. After that, I felt great, ready to throw away my cane. But then I got worse again - I have since gotten IV prednisone treatments, 1,000 mg over three days (IV) - I didn't get the same results, as a matter of fact, it made me quite ill for a few days. I'm due for another now (once every three months). I'm on the walker now, I guess I really can't complain too much, some have it worse, some, much worse. BERNARD BUTCHER From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, March 07, 2007 1:50 PM To: Butcher, Bernie [SFS] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] New Address...please add to your address book Interesting. This is related to something I've wondered about: If 'TM' is 'inflamation of the myelin', which of course we've already been treated for, then do we really still have TM? I was treated with 5,000 mg methyl-prednisone during the first 5 days after my sudden (with-in 30 min) paralysis on my right side below my rib cage. My understanding was that the treatment completely cleared up the inflammation. So what I'm really dealing with is not TM, but the SIDE-EFFECTS OF TM (nerves that have been damaged), as well as the SIDE-EFFECTS of all that methyl-prednisone! Isn't that correct? Sally
Re: [TMIC] Do we really (still) HAVE TM?
Isn't that correct? Sally You are correct!! F
[TMIC] steroids
I'm talking a lot here. I don't mean to get tiresome, but as I've said before, if I can say anything that might possibly help anyone, I feel like I should do it. (The rest of you can just 'delete'. :) But when I hear you talk about all those steroids, Bernie, I think Candida. And who among us hasn't had plenty? I think I've mentioned this before, but I've found this to likely be one of the major factors in my problems. ANYONE who has taken antibiotics, steroids, or oral birth control pills is at risk of developing Candidiasis! Candida is a yeast (fungus) that everyone has in their body. However, it needs to remain in some kind of a balance with the good bacteria and fungus in our bodies, or it can cause some serious problems! Many health practitioners believe it's responsible for much more than the vaginal yeast infection and thrush, which the medical proffession already recognizes as being caused by Candida. It's believed to also be a factor in, if not the direct cause of, auto-immune disease, anxiety, depression, severe leg pains, migraine, chronic fatigue, insomnia, and a myriad of other common complaints - even autism! Once it gets out of control, it is multiplied (fed) by eating sugar and white flour (simple carbohydrates) and stress! Taking probiotics right after or with the medication can help to keep a healthy balance (you've heard of eating plain yogurt that has live cultures when you take antibiotics). But did anyone tell any of us that when we were treated with steroids? No one told me! Usually, you find out these things when it's too late. It can be treated, though, through diet, anti-fungal meds, or a combination of both. If all else fails, it's really worth checking it out! Sally
