Re: [TMIC] bandingLet's hope that July helps you out a lot. I am assuming you will be seeing doctors in New York and, hopefully, get more help and insurance. Janice
From: Dalton Garis Sent: Monday, June 07, 2010 6:34 AM To: Janice Nichols ; Kevin Wolfthal ; Patricia Cooley ; [email protected] ; Garis, Brooks (Darien, CT) Subject: Re: [TMIC] banding Janet; The convulsions could be attributed to brain lesions. I say "could be" because with my steel back rods and 7 fused lumbar and thoracic vertebrae there is no way to conduct either an MRI or a Myelogram. The United Arab Emirates does not offer more sophisticated analytical techniques, so there is no way of knowing what is actually going on beyond a firm diagnosis for Transverse Myelitis. I return to New York City in a couple of days with insurance beginning July, so maybe then we can get some answers. As to treatment, it is just Lyrica and Epanutin. The Lyrica milligrams were just upped to 900/day from 600/day, in hopes it can stop the convulsions, which are becoming more frequent, so that there is not a time I don't expect to convulse at any moment. The convulsions will cause my back and legs to contract, followed by the stomach, shoulders and neck convulsing in the other direction. Then my legs will not cooperate and will go out in all directions if I try to walk, same with using my hands or arms, or even my facial muscles. In fact, I look to all the world like someone with Cerebral Palsy, replete with slurred and stuttering speech. I don't spit or drool, however, so I'm counting my blessings. Then in some time like an hour or six hours, it goes away. You can imagine how weak and sore I am at that time. Take care, Dalton Garis Abu Dhabi/New York On 7/6/10 7:28 AM, "Janice Nichols" <[email protected]> wrote: Dalton, I was told by my neuro that once you have TM that you are more susceptible to MS. Your April attack sounds like your typical TM initial attack with the back pain, but I have not heard of convulsions going along with it. What does your neuro say about it and what meds have been given to you to help control the convulsions? Janice From: Dalton Garis <mailto:[email protected]> Sent: Sunday, June 06, 2010 9:52 PM To: Kevin Wolfthal <mailto:[email protected]> ; Patricia Cooley <mailto:[email protected]> ; [email protected] Subject: Re: [TMIC] banding Friends; What I pit together is this sequence of events for the onset of TM. 1.. I got sick with classical MS symptoms on the 9th of January after suffering increasingly with precursors that got stronger before the big attack on the 9th. Banding, or what is termed "the MS hug," began then and has never left for more than a few hours. 2.. I got this totally new thing on 24th of April. This was preceded the night before with back pain of a kind I had never experienced before, intense, but not so bad when compared to all the other back pains I have had. It went across the bottom of the back, came on very quickly and only lasted the night. The next day after doing my economics lecture at the Institute, I bacan to look and feel very sick. Then I began to convulse. My back and leg muscles would arch me backwards, then my stomach, shoulders and neck muscles would arch me the other way. It wouldn't stop and I was taken by ambulance to the hospital. Then the banding got much stronger and went farther on the sides and deeper into the tissue. 3.. After that TM attack on 24 April the one-side-only MS symptoms almost disappeared and I have been dealing with TM both-sides symptoms, plus the attacks of muscular convulsions ever since. Convulsions come every couple of days, usually during speech or stress, and the banding never goes away now. Today I get ready for tomorrow's flight by stocking up on meds, and getting a signed note from the doctor explaining to any who may witness it (1) that my convulsions are not dangerous, require no medical intervention and that therefore, I should be allowed to board the plane; and (2) that the plane need not put down if and when these convulsions are witnessed on board. I hope this helps understanding what happens sometimes. I believe, although I can't prove it, that the MS opened the door for the TM; that the TM combined somehow with the MS; so that now I have recurrent transverse symptoms facilitated by the presence of the MS. This leaves me with with these TM attacks of convulsions followed by extreme limb weakness. Dalton Garis Abu Dhabi/New York. On 7/6/10 6:10 AM, "Kevin Wolfthal" <[email protected]> wrote: Patricia, I just started getting the banding in the past year, after 22 years of having tm. It's a girdling feeling in my upper torso. When it started I thought I was having a heart attack. I had my heart checked a few weeks ago and it's fine except for occasional tachycardia which I am treated for. The last two years have been extremely stressful. I've lost a lot of weight and have great anxiety as a result. I am guessing the banding is related. Someone mentioned eating causing banding. I've noticed a relationship between eating and banding also, but it seems to be worse when I don't eat. TM is a weird animal. My tm started with horrible foot pain. Now my feet are mostly numb, but I sometimes get the stabbing pain. Kevin Patricia Cooley wrote: > Kevin I guess I am lucky I don't have banding, just horrible neurophy > in my feet which drives me insane. I sure wish there was something > they could do for all our pain. > Patti - Wisconsin > > On Sat, Jun 5, 2010 at 3:28 PM, Kevin Wolfthal <[email protected] > <">mailto:[email protected]> <mailto:[email protected]> > wrote: > > > > Does anyone find that the sensation of banding worsens during times of > emotional stress? > > Kevin > >
