Agree, about the mystery part. I get seizures similar to epileptic seizures although they start in the brain stem (where the activity was) and meds don't control them because the meds are designed for epilepsy. I have been experimenting with diet with great improvement. In future many of these conditions will be treated with dietary means, the use of special foods and the elimination of many common foods found in the industrial food chain.
Great discussion! And I pray for reduced discomfort for all of us. Dalton Dalton Garis Flushing, Queens New York, USA Mobile: 718-838-0437 From: Roger & Terese Pratt <r.c.pr...@frontier.com> Reply-To: Roger & Terese Pratt <r.c.pr...@frontier.com> Date: Thursday, 4 January 2013 11:40 PM To: Pat Voorheis <pjv1...@chartermi.net> Cc: Janice Nichols <jan...@centurytel.net>, dee jay <dj88up...@yahoo.com>, "<tmic-list@eskimo.com>" <tmic-list@eskimo.com> Subject: Re: [TMIC] Hello Resent-From: <tmic-list@eskimo.com> Resent-Date: Thu, 4 Apr 2013 20:40:44 -0700 Pat, My second attack was not called TM because it was not an attack on the spinal chord, but rather an attack on the peripheral nerves. Both are assumed to be auto-immune caused. In other words, the immune system attacking the nerves, and both were treated with steroid IVs to stop the attack. So many illnesses are auto-immune caused: MS, diabetes, and the list goes on. Why this happens no one knows. It has been said that TM only happens once, but what do they know? It's all a mystery to me. And how do they find a cure, when they really don't understand the cause? It's just my hope that all my TM, MS, and other auto-immune diseases (syndromes?) friends can find ways to cope and hopefully get better. Roger in Kennewick, WA From: Pat Voorheis <pjv1...@chartermi.net> To: Roger & Terese Pratt <r.c.pr...@frontier.com> Cc: Janice Nichols <jan...@centurytel.net>; dee jay <dj88up...@yahoo.com>; "<tmic-list@eskimo.com>" <tmic-list@eskimo.com> Sent: Thursday, April 4, 2013 8:04 PM Subject: Re: [TMIC] Hello Anne and Roger, I am perplexed by both of your posts because of how long you have had TM and that you have had further attacks after so many years. Anne, you said you are now confined to a bed or wheelchair, but didn't say if it was the result of a new TM attack. Did you have a second attack many years after the first? I also wonder if either of you have a clue as to what triggered your attacks. My TM was idiopathic and I truly believed after nine years of no new symptoms (I have plenty old symptoms) that I wasn't going to have a second attack. Just one more reason to hope they find a cure. Patti - Michigan On Apr 3, 2013, at 9:10 PM, Roger & Terese Pratt <r.c.pr...@frontier.com> wrote: > Anne, > > I have had TM for over 19 years, with a secondary attack in 2010 that resulted > in peripheral nerve damage. I am on Lyrica, Cymbalta, Zanaflex, and Tylenol > PM for the TM stuff, other meds for high cholesterol and acid reflux. While > the meds help some, I find that I just need to stay as positive as possible > and "grin and bear it". Adverse reactions to meds and allergies are the pits, > but I say that is just because I am such a complex person. I hope you find > some meds that help. > > Roger in Kennewick, WA > > > > > > > From: Pat Voorheis <pjv1...@chartermi.net> > To: Janice Nichols <jan...@centurytel.net> > Cc: dee jay <dj88up...@yahoo.com>; "<tmic-list@eskimo.com>" > <tmic-list@eskimo.com> > Sent: Wednesday, April 3, 2013 5:34 PM > Subject: Re: [TMIC] Hello > > > Hi Anne, > > I'm sorry to learn that you are experiencing difficulties after so many years > away from TM's clutches. I take 10mg Baclofen every eight hours that almost > stops the banding. The banding is around my mid-section - like a corset. I > also take Lyrica which has some muscle relaxing effects, but I really give > credit to the Baclofen. > > I hope you can find a muscle relaxer that works for you. Also, Baclofen is > inexpensive and Lyrica expensive if you do not have full drug insurance > coverage. > > TM since 2003, age 53, lesion level was C4-C6. > > Patti -Michigan > > On Apr 1, 2013, at 12:10 PM, "Janice Nichols" <jan...@centurytel.net> wrote: > >> Anne, >> >> Glad you found our group. It would help if we knew what meds you were on. >> Many of us are on different meds for the same problems. Also, there are >> some meds that almost all of us take. >> Some have more painful banding than others too. I do not have ³painful² >> banding, just a pressure feeling. But I am sure you will hear from others >> that have more of a problem with it. >> >> Come on TM¹ers. Anne needs help from all of you. >> >> Janice >> >> >> From: dee jay <mailto:dj88up...@yahoo.com> >> Sent: Sunday, March 31, 2013 9:05 PM >> To: tmic-list@eskimo.com >> Subject: [TMIC] Hello >> >> Hello everyone. My name is Anne and I have just joined your group. I was >> diagnosed with TM in 1975, completely recovered, and then 23 years later here >> I am confined to a wheelchair/hospital bed and will be for the rest of my >> life. I hae just started experiencing this "banding" and have so many >> allergies to medications even the doctor does not know what to do. Any help >> would be appreciated. > > > > >
