Living with Transverse Myelitis

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Nero

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Help.OK. I've been to a number of specialists. I was diagnosed with transverse myelitis, but I wouldn't accept the diag. from my neuro because of the fasciculations. You know, I looked up "twitches" in Google, and sure enough > **S. Both neurologists that I have seen, have said, after a multitude of test (I've listed all of the testing in other posts on the forum), that my malady was virally caused. I did find a TM web site that indeed confirmed my symptoms and the exact process my neurologist used to diagnose me. However, my neuro dismissed me after about 16 weeks with a handshake and a bottle of Ativan (does help with the fascics). I'm in pain and fatigue easily ever since this neurological mess. However, I've gotten better, but not much. I'm living with it.Does ANYBODY know of a sympathetic neurologist in the Massachusetts/BOSTON region? Somebody? Please?Thanks, Z
 
No, but if you can manage it, go to the Mayo clinic in Florida, Minnesota or Arizona, that is if you want to be taken seriously and treated with respect.
 
You May get treated with respect, but you will go a long way and spend a lot of money to get the same diagnosis BFS.I am amazed at how far we will go with this when any decent neruo can properly diagnose our disorder, ALS or BFS or anything else. Just what are we looking for? Will we finally be happy when one of these doctors say "you have six months to live" :unsure:
 
Z, I meant if your insurance allows you to refer yourself, it is the same cost, you just have to get there. I had more tests done in 4 days than I did in a year at home. At home your GP says, "lets do some blood tests", you do the tests and usually go back in 4 weeks to discuss the results, then its "lets try and MRI", you schedule that which takes a couple of weeks, then follow up a couple of weeks after that with the GP, and so on. This is all done in days at the Mayo. And for Roger, I did not go to the Mayo looking for ALS, I went looking for Answers, and before I give up and accept that this is now my new way of life, I have to check every possibility, I am hard pressed to accept there is no known cause for what I endure everyday.
 
Hey Tom - I got an 'answer' yesterday "we don't know". Argghhh. Took a half day off work, went downtown to a major research teaching hospital's neurology center for an appt. with their neuromuscular guy and got nothing but a reassurance that tonic water could help if I put enough vodka or gin in it. Well, I'm exaggerating but not too much....He did want to order a GAD antibody which I haven't had, he found one test the other NM guy missed......Ouch - pain - have to leave. Anger brings out the worse in me (Hulk - muscular scale - there's a Dx).........
 
Oh, Z, sorry to carry on - hope you find a second (or 3rd whichever this is) opinion. I'm just not over-joyed with my 2nd opinion and even though I don't accept this situation for myself either it is rather hopeless sometimes without medical researchers showing any interest. There must be quite a few neurologists in your area that are good - did you try a search of this site?
 
Ok, now I'm really worried of having transverse myelitis. OMG, it's always something new to worry about. My onset was acute, after a very bad stomach infection. Then extreme pain in my hips/low back/buttocks and feet - then paresthesias in the pain area and fasciculations, and then it spread to my whole body. The pain is very fluctuating.No real weakness, but feel so weak. All activity makes it worse. Can I have transverse myelitis??? I've had the symptoms for 9 mounths now.. How will transverse myelitis be diagnosed? I have clean EMG and neurography (in april) and a signal change on MR.. pathologic VEP. My impression is that I have more pain and more paresthesias than most people in this forum..Please answer me, I can not stand more time on google... If I have transverse myelitis and have had it for such a long time, how is the prognosis? Meds? Feeling bad:( Hugs to all
 

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