Hi Natalie, It's an antibody dependent disease of the central nervous system. Unlike MS, which requires immunomodulation, Devic's requires immunosuppression to keep the level of antibody down. I'm not sure how many of us there are. Several years ago they were saying roughly 300 in the US. The last number that I heard was around 1200. I'm sure that there are more cases, but it is often misdiagnosed. I was diagnosed in 2005 via the Mayo's serum antibody test. The diagnosis knocked me for a loop, and I have days whenever I am in total denial, but for the most part I'm coping. If it were a disease with a more predictable course, maybe it would be easier for me to wrap my head around it. Ah well, life goies on.
Grace > . > > > > *"Grace M." <[EMAIL PROTECTED]>* wrote: > > > Hi again Natalie, > > It's a chemo infusion. My TM and blindness episodes were caused by > Devic's disease. I continued to relapse despite medication, so we decided > on Rituxan. Relapsing Devic's can be deadly. Estimates are that up to 1/3 > of relasping patients will die from respiratory failure due to a compromised > brain stem. The goal is to lengthen the time between attacks, and to > minimize the severity whenever the recur. It's no picnic. :-( > > Grace > > > > > > > > *"Grace M." <[EMAIL PROTECTED]>* wrote: > > > > Hi Natalie, > > > > The most important thing that we can do for ourselves---is to educate > > ourselves. Natalie, I've had several close calls, (One at a huge teaching > > facility.) where I've gone into the emergency room and the neuro knew > > nothing about Devic's. Thank heavens that I know my treatment protocol > > inside and out and have a very big mouth---otherwise, who knows? That's > > one of the reasons that I am glad to be back in Pennsylvania. I'm with my > > old neuro from UPMC. He's an absolute gem. I know that if anything > > negative happens, up to and including the worst, that it won't be because he > > doesn't know his stuff. He's always on top of things. So far since > > starting Rituxan, I've been suppressed and relapse free for almost 4 > > months. I'm keeping my fingers (And toes ;-) crossed. > > > > Grace > > > > > > > > > > > > > > > *cakalley <[EMAIL PROTECTED]>* wrote: > > > > > > Natalie, > > > > > > My Nero also doesn't keep up on the latest on TM. He did know enough > > > after ruling everything else out, that it was TM. However, he did not know > > > about the Plasma Exchanges. It was only after my sister gave him the John > > > Hopkins website and info. that he called and investigated the PLEX > > > treatments. He's told me that he has tried it on several other patients - > > > some helped some didn't. > > > What I do now, is take in the TM digest when I get it and point out > > > certain items to him. Sometimes he takes it and makes copies of an > > > articles > > > or other articles that he has found when he has flipped thru it. > > > I have also printed out info from here and what I have found out on > > > the web and take these in also. He'll flip thru them, stop and look at > > > different items that he finds interesting. Hopefully, he will read and get > > > curious and then from there do more investigation. > > > If you ever watch the Discovery Health channel, many patients or > > > relatives of patients, have to do all kinds of investigating not only of > > > symptoms but also on specialists in the field of problems. > > > My GP is better at looking things up than my Neuro BUT both are males > > > and you know males are least likely to "ask for directions". > > > Well this is my novel - Sorry. > > > > > > Candy K. > > > > > > > > > > > > -----Original Message----- > > > >From: natalie mizenko > > > >Sent: Aug 3, 2007 7:29 PM > > > >To: Transverse Myellitis > > > >Subject: Re: [TMIC] Neurologist, Rheumatologists > > > > > > > > Regina, > > > > You have every right to vent. We all have to vent every now and > > > then. I went to my back surgeon who had done 3 surgeries on L5-Sl the > > > last 2 > > > years, finally the last surgery he fused it. I had Cauda Equina Syndrome. > > > I > > > had heard that it could paralyze you, very rare tho. Well, he said it was > > > not related to Cauda Equina & was not anything from L5-Sl. He didn't know > > > for sure cuz I couldn't have an MRI. I had a dorsal column stimulator in > > > for > > > pain (14 years it was still in & didn't work) but I cud not have MRI's due > > > to the magnetic leads attached. So he left went on vacation for 2 wks. & > > > he > > > sent me to a Rehab. I think he should have sent me to one of his > > > co-doctors, > > > but he did not. By the time he was back both legs were paralyzed and it > > > was > > > too late for any treatment to work. And my internist to this date says "I > > > don't know hardly anything about TM". Why doesn't he eduate himself on it? > > > P.O.'s me, ya know? An a internist of all things. It was very ironic, > > > but > > > > another person in my internist's office got TM within a couple mths. > > > of me getting it. I went in for pain control (hospital). Another dr. was > > > on > > > call & he said it is ironic as rare as TM is; I have a patient upstairs > > > I'm > > > doing steriod treatment on to try and reverse it. He said "I didn't know > > > anything about it, til I looked up the symptons on the internet". I felt > > > like saying "will you eduate you partner on it, my dr.? But, I did not. I > > > think one day I'll print out literature and give it to him the next visit. > > > Geez, I ended up venting. I guess it's the day. Natalie M. > > > > > > > > > > > > > > > >Regina Rummel wrote: I was diagnosed with Sjogrens in the mid-80s and > > > that's when I started seeing a rheumatologist regularly. After that, I > > > understood why I had dry eyes and have been using eye drops ever since. I > > > subsribed to the Sjogren's newsletter and joined a group. Many in the > > > group > > > were in bad shape, complications like Lupus, etc. I had no problem beside > > > the dry eye and some fatigue. I learned about autoimmune diseases, > > > possible > > > complications, central nervous system attacks unlikely (so they said at > > > the > > > time), and I profusely thanked my lucky star that all I had to complain > > > about was dry eyes. > > > > > > > > Then, sometimes in 2004, I woke up with strange sensations in my > > > left leg and sensed my balance a bit off. Checked on line, and found > > > something that described what I felt (peripheral neuropathy), made an > > > appointment with a neurologist that I also began seeing regularly. > > > > > > > > I didn't see the need to see a GP. Rheum. and Neuro. were taking > > > care of me consulting with one another. That was maybe a mistake, but why > > > also see a third doctor, I thought. > > > > > > > > Shortly after, when I told the rheumatologist that I didn't feel my > > > bowel movements, she immediately sent me for Cytoxin treatments, an MRI, > > > and > > > put me on high doses of prednisone. I looked at the prescription and read > > > "Transverse Myelitis". I had no idea what she was talking about. And of > > > course, I saw the neuro regularly. > > > > > > > > I progressively got worse in spite of the above treatments, plus > > > IVIG treatment. Nothing helped. > > > > > > > > The last time I saw my rheumatologist was in February of this year. > > > (I'll be venting now.) I had been seeing this woman for 10 years, ever > > > since > > > I moved from L.A. I walked in for the first time with a walker. I was > > > so weak and tired, I could hardly walk. Even though she knows me well, she > > > never asked "what's with the walker, what's going on?". Oblivious, she > > > checked me out, filled out all the paperwork, and sent me on my way with a > > > cheerful "You're doing great!". I can't even begin to tell you how angry I > > > was. How can a doctor who knows you so well be completely oblivious when > > > she/he sees you walk in with a walker for the first time in 10 years? > > > > > > > > I called her back the next day and insisted that I get an MRI > > > because I was on the verge of getting a wheelchair and I knew something > > > was > > > very wrong. I got it, and promptly got a call from her telling me that my > > > "cord is at risk, make an appointment immediately with the radiologist, > > > he'll take care of it". Again, I didn't understand what an AVM was. The > > > radiologist sent me to a neurosurgeon in San Francisco who apparently was > > > familiar with this AVM thing. > > > > > > > > I was soooooooooooo happy! > > > > I thought he was going to take care of that pesky problem in my > > > spinal cord that had been fermenting for as long as possibly six years he > > > said. My Gosh! I thought, if I had caught it six years ago, maybe I > > > wouldn't > > > have TM now. But who knew? > > > > > > > > Well, I had the surgery, I went through acute rehab, blah, blah, > > > blah..... > > > > And I'm back to where I was. No difference. > > > > Same struggle, blah, blah, blah.... > > > > > > > > Now, I know you're wondering why I'm telling you all this. You've > > > probably heard it from me before. Well, I'll tell you. It's that piece I > > > read last night in the new TMA newsletter on page 20 and I quote Julius > > > Birnbaum, MD: > > > > "In my experience, patients with neurological rheumatic disease are > > > fatigued by the process of being separately evaluated by individual > > > Neurologists and Rheumatologists, etc." > > > > > > > > In my case, "fatigued" is an understatement. If you've read that > > > piece, I would really like to hear your comments. Are these doctors really > > > helping us? If there is no cure, outside of needing meds, what's the use? > > > "Que sera, sera" is on my mind. > > > > > > > > Incidentally, I hope you're not "fatigued" yourselves after reading > > > this blah, blah, blah... message. Please forgive me if you are. You've > > > been > > > so kind in the past in allowing me to vent freely. > > > > R > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >--------------------------------- > > > >Be a better Globetrotter. Get better travel answers from someone who > > > knows. > > > >Yahoo! Answers - Check it out. > > > > > > > > > Candy K. > > > > > > > > > ------------------------------ > > > Shape Yahoo! in your own image. Join our Network Research Panel today! > > > > > > <http://us.rd.yahoo.com/evt=48517/*http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7> > > > > > > > > > ------------------------------ > > Shape Yahoo! in your own image. Join our Network Research Panel today! > > <http://us.rd.yahoo.com/evt=48517/*http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7> > > > > > ------------------------------ > Shape Yahoo! in your own image. Join our Network Research Panel > today!<http://us.rd.yahoo.com/evt=48517/*http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7> > >
