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> > >
