Re: [TMIC] question you probably already heard
I got this information from Medline Plus. There is a link to it at the Transverse Myelitis Association Website. I don't know if it is helpful with TM (maybe if the TM is the recurring kind), but I don't believe it is used. "This medication is used to treat patients with multiple sclerosis (MS), a disease in which the nerves do not function properly and patients may experience weakness; numbness; loss of muscle coordination; and problems with vision, speech, and bladder control. This medication will be injected subcutaneously (under the skin) every other day. Your health care provider will show you how to prepare and give the injection. Interferon beta-1b is a man-made version of a naturally occuring protein. It is used to treat patients with relapsing forms of MS (course of disease where symptoms flare up for a short time, then go away). Interferon beta-1b does not cure MS but may reduce the number of disease flare-ups.Interferon beta-1b may be prescribed for other uses; ask your doctor or pharmacist for more information." Roger in Kennewick, WA - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Tuesday, September 26, 2006 7:17 PM Subject: [TMIC] question you probably already heard Hey everyone! It's been awhile since I last emailed.Mikehasn't hadmuch to any improvement since I last posted, but one good thing is he has recentlygained the use of hisright thumb and limitedmovement in his fingers onhis right hand.It certainly isnt' much, but its something. Anyhow,I have a question you all probably heard over and over again. I recently read a brochure on a drug called Betaseron. Have any of you used this drug? Does it help (like it says it does) with reducing an existing lesion? Help me...what does this drug actually do for TM patients??? Ami Myers Netscape. Just the Net You Need.
Re: [TMIC] Vibrations
I used to tell people that it was like holding on to a low voltage electric fence. I once touched an electric fence as a kid. Although the tingling/vibrations aren't as strong, that was the only way I could think of to explain it. - Roger in Kennewick, WA - Original Message - From: Jill Z To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Thursday, August 24, 2006 2:21 PM Subject: [TMIC] Vibrations Pam, The vibration feeling is like someone hit your spine and nerves all the way down with a tuning fork. YOU FEEL IT EVERYWHERE. Almost like a little electrical shock in a way. I would feel it with every step I took and God forbid if someone patted me on the back...It was hard to smile. It doesn't hurt but it's such a weird sensation. Maybe not everyone gets that feeling? Jill in Chicago[EMAIL PROTECTED] wrote: KRISSY AND NEDA!!! EXACTLY WHAT DO YOU MEAN WHEN YOU SAY VIBRATIONS? IS IT LIKE YOUR BODY SHAKES ? COULD IT BE SPASTICITY LIKE A JERKING MOVEMENT. I TAKE 900 MGS OF NEURONTIN ALSO. I TAKE IT 300MGS 3TIMES A DAY THAT HELPS ME THAN ALL AT ONE TIME, BUT WE ALL ARE DIFFERENT. LYRICA IS THE NEW DRUG LIKE CYMBALTA FOR NEUROPATHIC PAIN AND DIABETES OR DEPRESSION. WELL I HAD A BAD REACTION FROM THAT DRUG. I AM TRYING TO DECIDE IF I WANT TO TRY LYRICA. I HAVE A BOTTLE OF SAMPLES HERE BUT MY DOC AND I WILL DISCUSS ON MY NEXT VISIT ON THE 5 TH OF SEPT. NEDA I THINK IT WAS YOU WHO SAID WEATHER SOMETIMES MAKES IT WORSE LIKE RAIN? I HAVE NEVER HAD A PROBLEM WITH THE WEATHER MAKING MINE WORSE. LYRICA IS A DUG LIKE NEURONTIN GENERIC IS GABATIN. ALOT OF PEOPLE SAY IT REALLY HELPS. MY DOC TOLD ME IT HAS LESS SIDE EFFECTS THAN NEURONTIN. THE ONLY SIDE EFFECT FROM NEURONTIN FOR ME WAS WEIGHT GAIN WHEN ON 1600 MGS. THEN WE WENT TO 1200 NOW AT NINE. I HAVE LOST THE WEIGHT I GAINED. I DO THINK MY DOSAGE NEEDS TO BE BUMPED UP ALSO. I WILL WAIT AND SEE WHAT WE OR GOING TO DO ABOUT THE LYRICA. BEST WISHES PAM
Re: [TMIC] baclofen 30 MG A DAY
I take a medication called tranxene, but only as needed. My spasms haven't been too bad for a while now. (I've had TM for 12 years or so.) Hope you can find something that will work for you! - Roger in Kennewick, WA - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, August 04, 2006 1:07 PM Subject: [TMIC] baclofen 30 MG A DAY HELP NEED SOMETHING FOR SPAZMS.this makes them WORSE what are you guys taking ?? THANKS SOO MUCH
[TMIC] Re: Lyrica and dry mouth
Lynn, about 5 of the meds that I'm taking have the side effect of dry mouth. These are some of the tips my dentist recommended for dealing with dry mouth: Tips for Managing Dry Mouth If your dry mouth is caused by medicine, your physician might change your medicine or adjust the dose. Visit your dentist regularly for prophylatic maintenance. Request fluoride treatments. Maintain meticulous oral hygiene using SLS-free, fluoridated (Biotène Toothpaste) Moisten your mouth with Oralbalance. May be used under dental prostheses. (Biotene mouthwash) Chew sugarless, enzymatic moisturing gum, Biotène Dental Gum. Avoid alcoholic, carbonated, citrus and caffeine-containing drinks. Apply lip lubricants or balms as required. Drink liquids with meals and use gravies, sauces, yogurt, broth, margarines, and mayonnaise to make food easier to swallow puree foods or try soft foods like macaroni and cheese, stews, mashed potatoes, soup, scrambled eggs, cottage cheese, canned fruits and vegetables, yogurt and ice cream. Avoid dry foods such as cookies, toast and crackers, or soften them with liquids before eating. Carry a small water bottle so you can take frequent sips during the day. Suck sugarless hard candies (avoiding those with citric acid). Avoid overly salty foods. Avoid chewable vitamin C and acidic, sugared lozenges. Using the Biotene toothpaste and mouthwash have been extremely helpful, along with using the sugarless hard candies and carrying the small water bottle. Roger from Kennewick, WA - Original Message - From: "Lynn Pouliot" [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, May 26, 2006 6:58 AM Subject: Re: [TMIC] Neurontin Side effects Neurontin Medications - Neurontin Online I Have been taking Lyrica for about 1 month. I definately noticed that it increased my dry mouth. I already had dry mouth from the bladder meds that I am taking, but now my mouth is like the sahara desert. Sometimes it is so dry I can't swallow and now my sinuses are dried out too. I started out taking 75mg twice a day and stopping my tegratol. right away I noticed my legs were not hurting anymore. After a couple of weeks I started to get terrrible numbness in my right leg, traveling up to my middle with that tight banding, then freezing cold down my left side. Now they have increased the lyrica to 150mg twice a day. still feeling woozy from the increase in meds but it is starting to wear off. The dry mouth is so bad I am wondering if I should go off of the lyrica and back to good old tegratol. Any suggestions? Lynn in RI - Original Message - From: "Mary W" [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Thursday, May 25, 2006 8:16 PM Subject: [TMIC] Neurontin Side effects Neurontin Medications - Neurontin Online According to this website, eye problems can occur with neurontin...usually at the start of taking the medication and then gradually wearing off. Mary W Grass Valley Ca http://www.neurontinonline.com/neurontin_side_effects.html
Re: [TMIC] testing
Yes. I wondered why I haven't seen posts from you for a while. Thought you might be a lurker like me. - Roger :-) - Original Message - From: Gillian Clark To: tmic-list@eskimo.com Sent: Saturday, May 13, 2006 3:06 AM Subject: [TMIC] testing will someone please let me know if I pass? hugs Gilly
Re: [TMIC]
Hi Chantal, I am taking Lyrica for TM caused nerve pain. I just looked it up on the internet and it said, This medication is used to treat pain caused by nerve damage due to diabetes and shingles (herpes zoster) infection. It is also used with other medications to treat certain types of seizures (partial onset seizures). It seems to be helping and doesn't have the side effects of Neurotin. Hope this helps. - Roger in Kennewick, WA - Original Message - From: Gaet's [EMAIL PROTECTED] To: TM subscriber tmic-list@eskimo.com Sent: Thursday, April 27, 2006 6:09 AM Subject: [TMIC] Hi, Can someone tell me if Lyrica is taken for TM or for other medical reason thanks have a nice day Chantal in canada
Re: [TMIC] Chiro
My wife works for Social Security and she says: Hi Sally, As a disability claims representative, I can tell you that there is absolutely no SSA law saying that you must wait a whole year to reapply for benefits, after you found you were unable to go back to work. I don't know where you got that idea from, but we SSA employees find that there is a lot of misinformation circulating by word of mouth. Keep in mind that SSDI refers to benefits for people that have worked 5 out of the last 10 years prior to becoming ill, and SSI refers to social security's welfare program for people who don't have enough work history to qualify for SSDI.There are different rules regarding going back to work for the two different programs.Please, please, pleasedon't use "grapevine" information! Make an appointment to talk to a disability claims representative in your local office who can answer your questions accurately! Terese Doctor's think they have the proper information, but many times don't. 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. You have to remember that "this ain't Kansas anymore, Toto"and that many doctors done't fully understand what we are going though. Mine is just relieved that this isn't MS. Roger in Kennewick, WA - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Friday, April 14, 2006 8:02 PM Subject: Re: [TMIC] Chiro Thanks for replying! That is my concern, too - going back to work. Some days I can do very little, even though I don't have to go to work now. I wonder how I could possibly handle the basic self-careplus working, too! And it was particularly at the point that I mentioned fatigue that she said that with a light case, I shouldn't have a problem with that! Plus, if I went back to work before I was ready to handle it, I'd have to wait a whole year to re-apply for SSDI, if I was out that long, again. It seems like I'm better off to not even try until I've had time to really heal, and then be able to STAY at work until I'm ready to retire. Sally
Re: [TMIC] Chiro
She somehow thinks that MS is worse. Got me??? - Original Message - From: Sharon Marsden To: ROGER C PRATT ; [EMAIL PROTECTED] Cc: tmic Sent: Sunday, April 16, 2006 4:01 PM Subject: Re: [TMIC] Chiro Great information. Thanks to Roger and to Terese! Roger, why did you say "Mine is just relieved that this isn't MS"? Sharon TM 1997 to MS 1998ROGER C PRATT [EMAIL PROTECTED] wrote: My wife works for Social Security and she says: Hi Sally, As a disability claims representative, I can tell you that there is absolutely no SSA law saying that you must wait a whole year to reapply for benefits, after you found you were unable to go back to work. I don't know where you got that idea from, but we SSA employees find that there is a lot of misinformation circulating by word of mouth. Keep in mind that SSDI refers to benefits for people that have worked 5 out of the last 10 years prior to becoming ill, and SSI refers to social security's welfare program for people who don't have enough work history to qualify for SSDI.There are different rules regarding going back to work for the two different programs.Please, please, pleasedon't use "grapevine" information! Make an appointment to talk to a disability claims representative in your local office who can answer your questions accurately! Terese Doctor's think they have the proper information, but many times don't. 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. You have to remember that "this ain't Kansas anymore, Toto"and that many doctors done't fully understand what we are going though. Mine is just relieved that this isn't MS. Roger in Kennewick, WA - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Friday, April 14, 2006 8:02 PM Subject: Re: [TMIC] Chiro Thanks for replying! That is my concern, too - going back to work. Some days I can do very little, even though I don't have to go to work now. I wonder how I could possibly handle the basic self-careplus working, too! And it was particularly at the point that I mentioned fatigue that she said that with a light case, I shouldn't have a problem with that! Plus, if I went back to work before I was ready to handle it, I'd have to wait a whole year to re-apply for SSDI, if I was out that long, again. It seems like I'm better off to not even try until I've had time to really heal, and then be able to STAY at work until I'm ready to retire. Sally Sharon (in the Arizona Desert)TM 1997 to MS 1998 It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.
Re: [TMIC] Chiro
I'm not sure what "light case" of TM is. There are many of us "walking wounded"that look just fine. I was convinced that mine was a light case and tried to go back to work. That was almost 12 years ago. The fatigue is the worst. Hope the chiro helps you. You were lucky to find one that is familiar with TM. Be careful and ask for only soft adjustments. Roger in Kennewick, WA - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, April 14, 2006 3:31 PM Subject: [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
[TMIC] Fw: The Spoon Theory
My son sent me this link and I thought it might interesting to the TMIC list. Roger in Kennewick, WA http://www.butyoudontlooksick.com/2006/02/the_spoon_theory.php#more
Re: [TMIC] osteoporosis
Hi Linda, I don't post often, but read all the posts everyday. I don't know how osteoporosis is for men, but I do know about seizures. I had seizures for two years before my TM diagnosis (none since). I was put on a number of medications (Febatol, Tegretol, Dilantin, Depakote) which I had allergic reactions to(rashes) when I tried to get to therapeutic dosages. I was finally put on primidone, and that was discontinued when I was diagnosed with TM. I have often wondered if the seizures were early signs of TM since I only passed out on my first seizure and only had jerking seizures from then on. Once I got steroids by IV for 3 days, the seizures stopped. I've had muscle spasms off and on, but no seizures. My doctors don't know (at least can't explain) what the relationship was between the seizures and TM. Interesting question. Do your doctors have any explanations. All my best, Roger - Kennewick, WA - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: TMIC-list@eskimo.com Sent: Monday, April 03, 2006 9:29 PM Subject: Re: [TMIC] osteoporosis Well Patti, your post certainly made me think twice. I don't have an answer to your question, but I do know research has come a long way in treating osteoporosis. Do you know our ages, when TM came to live with us and menopause are the same? I have not had a bone density test and I was having seizures for 2 years prior to being put on seizure medicine (Lamictal) and had no idea that osteo could be caused by anti seizure meds. I have to say now I am a little concerned. I have 2 doctor appts coming up - I will have to ask, I guess to relieve my mind - or give me something else to worry about : - ) Please let us know what the doctor says. Linda - Bothell, WA -- Original message -- From: [EMAIL PROTECTED] I had a bone density test two weeks ago and now have an appointment with an endocrinologist because of additional bone loss. I've done some research and read on WebMD of the possibility that osteo can be caused by anti seizure meds. I haven't found any info on Neurontin/gabapenten regarding osteo. I have been taking osteo meds since age 48 when a bone density test came back abnormal. A tests at 50 showed no additional loss and at 52 I had improvement. TM and menopause happened simultaneously at age 53, my density test at 54 showed no change. Now, at age 56 the numbers are dropping. I know menopause can be the culprit, but do any of you know anything about anti seizure meds and bone loss? What can the endocrinol! ogist help with (besides telling me to stop caffeine)? Patti - Michigan
[TMIC] Re: not recieving digest
I also lost the digest. I e-mailed Jim Lubin and he said the digest might be broken. So I have subscribed to the list rather then the digest and have started getting mail again. Best of luck, Roger Pratt :-) - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Wednesday, March 01, 2006 3:29 PM Subject: not recieving digest I HAVE NOT BEEN RECEIVING ANY MAIL FROM THE DIGEST. I HOPE I AM STILL ON YOUR LIST. I HAVE TM AND, AM INTERESTED IN READING EVERYONE'S LETTERS. MARIE DIPIETRO
[TMIC] Have I been cut off
I haven't gotten a digest for a few days. Have I been cut off the list? (My computer has been acting a little strangely lately.) Roger
Re: [TMIC] Muscle vibrations or tremors
I have those same feelings. Kinda creepy, but I don't think it is anything to worry about. Roger - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Monday, January 30, 2006 5:35 AM Subject: [TMIC] Muscle vibrations or tremors For the last few days I've been experiencing what feels like a sort of vibration or trembling feeling in some of my muscles. It seems to travel around between my chest, left forearm and thighs. I've experienced it to a smaller degree before, but never this much area at one time or for this length of time. It isn't painful or uncomfortable, and I'm not worried about it per se. It's just disconcerting. Ten years post-TM, I know that these kinds of things come and go. Anyone else experience this? Barbara H.
