Grace,
What type of medication is Rituxan - this is a new one to me. I wonder if it
helps on pain from TM. Was yours nerve pain that you had had so badly?
Thanks, Natalie M.
"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
>
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>---------------------------------
>Be a better Globetrotter. Get better travel answers from someone who knows.
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Candy K.
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