Re: [TMIC] Meds
I was told that fatigue and pain were the 2 basic problems with TM.I don’t think anyone has yet come up with a good med for fatigue – if it gives you more energy, you usually can’t sleep at nite. Sure would like to see more research done on this. Janice From: CANDIS KALLEY Sent: Tuesday, December 07, 2010 9:32 AM To: tmic-list Subject: Re: [TMIC] Meds I tried the Amantadine 100 mgm AM PM with not affect. I've given up on trying to fight the fatigue! Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Linda Egli le...@sbcglobal.net To: tmic-list@eskimo.com Sent: Tuesday, December 7, 2010 10:19:41 AM Subject: Re: [TMIC] Meds Provigil was the first drug I was given for severe fatigue in 1994 (when I was first dx) it did nothing but keep me awake about 20 hours a day. I take Amantadine 100 mgm AM PM, it has been the only thing that helps. If I am having one of my not so good days nothing helps. Linda E. East Texas From: CANDIS KALLEY cakal...@embarqmail.com To: tmic-list tmic-list@eskimo.com Sent: Tue, December 7, 2010 6:28:11 AM Subject: Re: [TMIC] Meds I have tried provigil with no affect! I have yet to find ANYTHING to help with the fatique! If anyone knows of anything to help with fatique I'd also like to know! I've tried the vitamins and suppliments that helped BEFORE TM with no help with the fatique! The TM fatique is horrible! Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: jack...@att.blackberry.net To: TMIC tmic-list@eskimo.com Sent: Tuesday, December 7, 2010 12:01:58 AM Subject: [TMIC] Meds Hello - I am taking baclofen and topamax from nero dr. Other dr suggested provigil. Ins does not cover very costly! Anyone on this - that could tell me if it helps with fatigue or your experience with it. Thanks. Sent via BlackBerry by ATT
Re: [TMIC] Meds
I think that is pretty accurate for all of us.By mid day, we poop out. I get my “have to” stuff done in the morning, then rest. Janice From: Butcher, Bernie (SFS) Sent: Tuesday, December 07, 2010 10:36 AM To: CANDIS KALLEY ; tmic-list Subject: RE: [TMIC] Meds My Neuro suggested I do anything to save strength. Take showers at night, get an electric wheelchair Which I did, and I feel OK until about 3 PM, then I fall apart, every day. I try to plan activities early in the day, but it’s hard, for example: If I’m gong to a wedding, it’s always late in the day. On weekends, it’s a nap at 3, Saturday and Sunday. BERNARD BUTCHER Honeywell Engineering 516-577-5868 From: CANDIS KALLEY [mailto:cakal...@embarqmail.com] Sent: Tuesday, December 07, 2010 10:32 AM To: tmic-list Subject: Re: [TMIC] Meds I tried the Amantadine 100 mgm AM PM with not affect. I've given up on trying to fight the fatigue! Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Linda Egli le...@sbcglobal.net To: tmic-list@eskimo.com Sent: Tuesday, December 7, 2010 10:19:41 AM Subject: Re: [TMIC] Meds Provigil was the first drug I was given for severe fatigue in 1994 (when I was first dx) it did nothing but keep me awake about 20 hours a day. I take Amantadine 100 mgm AM PM, it has been the only thing that helps. If I am having one of my not so good days nothing helps. Linda E. East Texas From: CANDIS KALLEY cakal...@embarqmail.com To: tmic-list tmic-list@eskimo.com Sent: Tue, December 7, 2010 6:28:11 AM Subject: Re: [TMIC] Meds I have tried provigil with no affect! I have yet to find ANYTHING to help with the fatique! If anyone knows of anything to help with fatique I'd also like to know! I've tried the vitamins and suppliments that helped BEFORE TM with no help with the fatique! The TM fatique is horrible! Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: jack...@att.blackberry.net To: TMIC tmic-list@eskimo.com Sent: Tuesday, December 7, 2010 12:01:58 AM Subject: [TMIC] Meds Hello - I am taking baclofen and topamax from nero dr. Other dr suggested provigil. Ins does not cover very costly! Anyone on this - that could tell me if it helps with fatigue or your experience with it. Thanks. Sent via BlackBerry by ATT
Re: [TMIC] Generic
Jack, I do the same thing.Only I forward it on to my husband so he can more understand what is going on with me. He is very understanding - usually trying to get me to slow down so I don't do the inevitable - overdo. But, when you are feeling pretty good, you want to keep going.Haven't quite mastered the technique of knowing when to stop and rest. I love it when you guys help me put into words what is happening. Love you guys, Janice -Original Message- From: jack...@att.blackberry.net Sent: Tuesday, December 07, 2010 11:11 PM To: TMIC Subject: [TMIC] Generic Sometimes I push save on your messages or mark unopened - thinking ... Wow I'm going 2 save this 4 so so 2 read this is good - this is just like me . If they read this it will explain my symptoms they will see that there r others out there feeling doing the same behavior Now they will understand- they will get it now!! But then I don't show then. I just keep them. Most of you are blessed 2 have folks around that understand the pain complications associated with tm and such a life changing event. I am loved by family however just feel lazy and worthless at times when I get stuck in comparing this life 2 life b4 tm. Ok enuff of my pity party. Thank God 4 all of you who I know understand fatigue pain and all the rest of the junk that goes with tm. Hv a good night. Thanks 4 being there. JackDuv Sent via BlackBerry by ATT
Re: [TMIC] fatigue
Cheryl, I hope you recover from your “day out” quickly. This is a nasty disease, but at least it is not terminal.I have 2 friends that will probably be celebrating their last Christmas this year and they know it. Just hang on til you start feeling better.You are strong and can do this. I wish for you the very best, Janice From: rn11...@yahoo.com Sent: Wednesday, December 08, 2010 9:58 AM To: tmic-list@eskimo.com Subject: [TMIC] fatigue Today I had a routine doctor's appt.@ 8:30. My sister and brother-in-law picked me up at 8. Rode 20 min. in car ;got in right away to office. Answered questions,vitals checked,etc. Waited a few min. for doc. He came in discussed my issues,showed him my right heel which split open a few days ago.Got scripts printed out for all my meds,a walker,and a shower chair. Had 3 vials of blood drawn,peed in a cup After that went to pharmacy for silver sulfadiazine cream for my foot.Finally got home at 10:15. Everything is sore and achy and the banding is super tight. I am exhausted and will suffer for days from 2 hrs and 15 minutes of walking and sitting. I seldom let tm get to me,but today is a bad day.How I hate this disease! Cheryl in Easthampton,MA
Re: [TMIC] question
Re: [TMIC] questionDalton, you said you are going to see your neuro, but have you seen a pain management doc?He has done far more for me than my neuro. Good luck, Janice From: Dalton Garis Sent: Wednesday, December 08, 2010 9:58 AM To: Bernie ; TMIC Subject: Re: [TMIC] question Well, friends; Since I last wrote, I am unable to walk very far or even stand up for very long. Probably just temporary, but the pain in my limbs and torso is really intense. Gotta see the neuro. I can’t even imagine how I will get to work tomorrow, or what I will do once there. I will ask neuro about Tegritol, but I already get convulsions and cramps, so I don’t know what he will think. But I gotta get a handle on this pain or its game over. Thanks, all. Dalton From: Bernie wlmailhtml:bpe...@austin.rr.com Date: Wed, 08 Dec 2010 03:30:19 -0600 To: Dalton Garis wlmailhtml:malugss...@gmail.com, TMIC wlmailhtml:tmic-list@eskimo.com Subject: Re: [TMIC] question Hey Dalton, Shot in the dark, but my doctors put me on Tegratol. Now it's original use is for seizures, but one of the side effects is it does sometimes stop the electrical, lightning bolt sensations. I was on it for a while, but started having seizures; my body couldn't metabolize the Tegratol correctly so it caused me to have seizures. It is a rare occurrence, but I seem to get them all...lol. But while I was taking it, it did help a lot with the 'electrical' impulses and shocks going through me. Might ask your doctor about it... Namaste, Bernie in Texas On 12/8/2010 2:59 AM, Dalton Garis wrote: May I break in with a question of my own? I am having a great deal of trouble with cramping and what I just learned is called hypertonis, which is too much muscle tone and willingness to contract, and the feedback loop to the brain that would tell the muscle not to contract being damaged by the TM in my brainstem, where the lesion was actually found. I can't continue to function with this hypertonis, which feels as if I am being electrocuted from the base of my spine, all the way down my legs and arms, so that it hurts a lot to move at all, or even talk. Only by being completely still and relaxed does this pain subside. Have any of you had experience with this? And if so, can you recommend a medication which might be useful? Thanks, and hope to hear back soon, Dalton On Dec 8, 2010, at 12:03 PM, Barbara Alma wrote: Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand what you mean about rehab differently. From what I understand, and I really didn't go into it all the way, you have exercises and walking. He told me that a very painful part is straightening the knee, as it will want to be bent to be in less pain, but not good since you develop scar tissue very quickly and if not careful, you will not be able to straighten it fully. I had a couple of visits and from the exercises that I was doing for my legs I no longer had the pain that I was having. At the time I also was having a lot of pain with my shoulder over for a year and a half at that point, so knew it would be extra painful on the shoulder. I use canadian crutches or a rolling walker to get around, and the orthopedic surgeon says that I walk on my shoulders, lol. I had rotator cuff surgery and a bone spur removed two months ago and am no longer in pain there, so when I really need the knee, I'll hopefully be in better shape. Good luck Rob, just thought I'd share my small bit of knowledge. Hugs, Barbara A in Auburn CA -Original Message- From: Robert Pall wlmailhtml:rp...@neillsupply.com To: tmic-list wlmailhtml:tmic-list@eskimo.com Sent: Tue, Dec 7, 2010 8:43 am Subject: [TMIC] question Have any of you gotten replacement hips or knees…..I think I may need a new knee and I was wondering….. if you have no feeling (other than pain) how do you rehab…surely you cannot do it the normal rehab way? Thanks Rob in New Jersey
Re: [TMIC] OT-Memorial Service
I wish you God’s strength.We are all feeling for you. Janice From: celr...@aol.com Sent: Thursday, December 09, 2010 7:38 AM To: TMIC-LIST@eskimo.com Subject: [TMIC] OT-Memorial Service Today we will have my daughter Pam's memorial service. I would like to thank you for all thought and prayers. It brings comfort to me knowing others are thinking of my family. I have five children and Pam was the middle child. My youngest son said now there is no middle. Three of the children are out of sorts with the others so we are just like any other stressed out normal dysfunctional family. Like John Lennon said:LIFE IS WHAT HAPPENS WHILE YOU ARE BUSY MAKING PLANS so live each day fully. I believe in GOD and Heaven and she will be watching for us. Pam is in a better place. See you in God's time. Jane Elrod/Splendora Tx
Re: [TMIC] MRI
Good luck John. You are right, it is trial and error and it takes a while in most cases. But, keep trying - that is all we can do. Janice -Original Message- From: john snodgrass Sent: Thursday, December 09, 2010 1:19 PM To: transverse myelitis Subject: [TMIC] MRI well the MRI i had done Friday didnt show up any new evidence of reoccurring. i guess that's good news. the pain levels are really up though. other Dr upped my neuronton from 3 400mg per day to 3 800mg per day to see if that would help. neuro backed my backlofen from 5 20mg per day to 4 20mg per day to see if it would help me to stop stumbling so much. all guesswork. trial and error. depressing.
Re: [TMIC] OT - Q A JOKES ONE LINERS.
Very Good!!! Thanks, Janice From: CANDIS KALLEY Sent: Thursday, December 09, 2010 8:58 PM To: tmic-list Subject: Re: [TMIC] OT - Q A JOKES ONE LINERS. Bernie Thanks I needed that! I'm still wiping my eyes! Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Bernie bpe...@austin.rr.com To: Bernard Pelow bpe...@austin.rr.com Sent: Thursday, December 9, 2010 9:46:44 PM Subject: [TMIC] OT - Q A JOKES ONE LINERS. Q A JOKES ONE LINERS. Q: Why don't you let blondes take coffee breaks? A: Because it takes too long to retrain them. Q: Why is there no such organization as Chocoholics Anonymous? A: Because no one wants to quit. Q: What do you do if you see someone having a seizure in your bath tub? A: Throw in a load of laundry. Q: How do you kill a blonde? A: Put a 'scratch 'n sniff' sticker at the bottom of a pool. My ex-wife was a great housekeeper. She divorced me and kept the house... Q: Did you hear about the restaurant on the moon? A: The food is terrific, but there's no atmosphere. A husband explains to the guys at the bar. Do you know why I left her? She started to use four-letter words like, 'Find work!' Your mother is so fat she has to use a boomerang to put on a belt... Q: How do you get holy water? A: Boil the hell out of it. Q: What did the fish say when it hit a concrete wall? A: Dam! Q: What do Eskimos get from sitting on the ice too long? A: Polaroids. Q: What do you call a boomerang that doesn't work? A: A stick. Q: What do you call Santa's helpers? A: Subordinate Clauses. Q: What do you call four bullfighters in quicksand? A: Quatro sinko. Q: What do you get from a pampered cow? A: Spoiled milk. The best way to keep kids at home is to make the home a pleasant atmosphere... and let the air out of their tires. Q: What do you get when you cross a snowman with a vampire? A: Frostbite. Q: What lies at the bottom of the ocean and twitches? A: A nervous wreck. Q: Where do you find a dog with no legs? A: Right where you left him. Q: Why do gorillas have big nostrils? A: Because they have big fingers If a mute swears, does his mother wash his hands with soap? Q: Why don't blind people like to sky dive? A: Because it scares the hell out of the dog. Q: What is the difference between a Harley and a Hoover? A: The location of the dirt bag. Q: Why does a pilgrim's pants always fall down? A: Because they wear their belt buckle on their hat. Q: What's the difference between a bad golfer and a bad skydiver? A: A bad golfer goes, WHACK! Damn. A bad skydiver goes, Damn. WHACK! Q: What do you call a man with a car on his head? A: Jack Q: How do you catch a unique rabbit? A: Unique up on it! Q: How do you catch a tame rabbit? A: Tame way, unique up on it! Q: What do you call skydiving lawyers? A: Skeet. Q: What goes clop, clop, clop, bang, bang, clop, clop, clop? A: An Amish drive-by shooting. Real women don't have hot flashes, they have power surges... Get a new car for your wife. it'll be a great trade...
[TMIC] MRI
Hi John I was wondering, why do they think baclofen is making you stumble? I know side effect is dizzy/tired. For me I have not experienced dizziness but I am getting so disgusted with fatigue I have started 2 slowly cut down recently. Was taking 5 20mg. Day. Now 4 hopefully can drop more. But getting so tired of all this tm crap My insides want 2 scream out as loud as I can!!! Hang in there. Hopefully u will get relief soon. Sent via BlackBerry by ATT
Re: [TMIC] MRI
seams like for now the increase in neuronton has helped the pain,,then again the barametric pressure is down and it was 55 drgrees today,,we will see in a couple of days when it is sub zero what happens...arghhh! --- On Sat, 12/11/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] MRI To: john snodgrass jcs...@yahoo.com, transverse myelitis tmic-list@eskimo.com Date: Saturday, December 11, 2010, 5:46 PM Good luck John. You are right, it is trial and error and it takes a while in most cases. But, keep trying - that is all we can do. Janice -Original Message- From: john snodgrass Sent: Thursday, December 09, 2010 1:19 PM To: transverse myelitis Subject: [TMIC] MRI well the MRI i had done Friday didnt show up any new evidence of reoccurring. i guess that's good news. the pain levels are really up though. other Dr upped my neuronton from 3 400mg per day to 3 800mg per day to see if that would help. neuro backed my backlofen from 5 20mg per day to 4 20mg per day to see if it would help me to stop stumbling so much. all guesswork. trial and error. depressing.
Re: [TMIC] question
We don¹t have such things here; No doubt the ³locals² have one, but for us expats, it¹s pretty basic. Essentially, if something fancy is needed the locals are flown to some European or North American country for treatment. But if we are in need of such a thing, we are sent home and our work visa is cancelled. The locals are a family, meaning that the weak members are supported. The expats are a team, meaning that the weak members are cut and sent home. Dalton From: Janice Nichols jan...@centurytel.net Date: Sat, 11 Dec 2010 16:21:15 -0600 To: Dalton Garis malugss...@gmail.com, Bernie bpe...@austin.rr.com, TMIC tmic-list@eskimo.com Subject: Re: [TMIC] question Dalton, you said you are going to see your neuro, but have you seen a pain management doc?He has done far more for me than my neuro. Good luck, Janice From: Dalton Garis mailto:malugss...@gmail.com Sent: Wednesday, December 08, 2010 9:58 AM To: Bernie mailto:bpe...@austin.rr.com ; TMIC mailto:tmic-list@eskimo.com Subject: Re: [TMIC] question Well, friends; Since I last wrote, I am unable to walk very far or even stand up for very long. Probably just temporary, but the pain in my limbs and torso is really intense. Gotta see the neuro. I can¹t even imagine how I will get to work tomorrow, or what I will do once there. I will ask neuro about Tegritol, but I already get convulsions and cramps, so I don¹t know what he will think. But I gotta get a handle on this pain or its game over. Thanks, all. Dalton From: Bernie wlmailhtml:bpe...@austin.rr.com Date: Wed, 08 Dec 2010 03:30:19 -0600 To: Dalton Garis wlmailhtml:malugss...@gmail.com, TMIC wlmailhtml:tmic-list@eskimo.com Subject: Re: [TMIC] question Hey Dalton, Shot in the dark, but my doctors put me on Tegratol. Now it's original use is for seizures, but one of the side effects is it does sometimes stop the electrical, lightning bolt sensations. I was on it for a while, but started having seizures; my body couldn't metabolize the Tegratol correctly so it caused me to have seizures. It is a rare occurrence, but I seem to get them all...lol. But while I was taking it, it did help a lot with the 'electrical' impulses and shocks going through me. Might ask your doctor about it... Namaste, Bernie in Texas On 12/8/2010 2:59 AM, Dalton Garis wrote: May I break in with a question of my own? I am having a great deal of trouble with cramping and what I just learned is called hypertonis, which is too much muscle tone and willingness to contract, and the feedback loop to the brain that would tell the muscle not to contract being damaged by the TM in my brainstem, where the lesion was actually found. I can't continue to function with this hypertonis, which feels as if I am being electrocuted from the base of my spine, all the way down my legs and arms, so that it hurts a lot to move at all, or even talk. Only by being completely still and relaxed does this pain subside. Have any of you had experience with this? And if so, can you recommend a medication which might be useful? Thanks, and hope to hear back soon, Dalton On Dec 8, 2010, at 12:03 PM, Barbara Alma wrote: Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand what you mean about rehab differently. From what I understand, and I really didn't go into it all the way, you have exercises and walking. He told me that a very painful part is straightening the knee, as it will want to be bent to be in less pain, but not good since you develop scar tissue very quickly and if not careful, you will not be able to straighten it fully. I had a couple of visits and from the exercises that I was doing for my legs I no longer had the pain that I was having. At the time I also was having a lot of pain with my shoulder over for a year and a half at that point, so knew it would be extra painful on the shoulder. I use canadian crutches or a rolling walker to get around, and the orthopedic surgeon says that I walk on my shoulders, lol. I had rotator cuff surgery and a bone spur removed two months ago and am no longer in pain there, so when I really need the knee, I'll hopefully be in better shape. Good
Re: [TMIC] MRI
I am down to 2 (20mg) each at 8:30pm.Takes me through the nite with very little spasming. I don't take any during the day now. Janice -Original Message- From: jack...@att.blackberry.net Sent: Saturday, December 11, 2010 5:36 PM To: TMIC Subject: [TMIC] MRI Hi John I was wondering, why do they think baclofen is making you stumble? I know side effect is dizzy/tired. For me I have not experienced dizziness but I am getting so disgusted with fatigue I have started 2 slowly cut down recently. Was taking 5 20mg. Day. Now 4 hopefully can drop more. But getting so tired of all this tm crap My insides want 2 scream out as loud as I can!!! Hang in there. Hopefully u will get relief soon. Sent via BlackBerry by ATT
Re: [TMIC] MRI
I stopped Baclofen because of the muddled mind--I guess we're all different On Sat, Dec 11, 2010 at 1:36 PM, jack...@att.blackberry.net wrote: Hi John I was wondering, why do they think baclofen is making you stumble? I know side effect is dizzy/tired. For me I have not experienced dizziness but I am getting so disgusted with fatigue I have started 2 slowly cut down recently. Was taking 5 20mg. Day. Now 4 hopefully can drop more. But getting so tired of all this tm crap My insides want 2 scream out as loud as I can!!! Hang in there. Hopefully u will get relief soon. Sent via BlackBerry by ATT
