Hi Ellen,

I totally relate...That's my full-time job too- going to docs. plus outpatient treatments...

The plasma exchange went really well...I started on Monday, and just had my second treatment today (5 in total)...They're really spreading them out, which I sorta like because I feel like the good effects might last longer this way...

I didn't have any bad reactions this time as I think that my bad reaction the last time was caused by having super low hemoglobin...The last month and a half, my hemoglobin shot way up to normal levels, so I am so relieved about that and generally feel better energy-wise, and heart-wise (the palpitations were the worst!). Each treatment has gone by really quickly too, and I don't need to use as many bottles of albumin all because my hemoglobin is at a normal level now...

Breathing problems are scary, that's for sure....My main area is the tongue...After I have an exchange, I don't have any episodes of tongue paralysis- that's the most irritating symptom for me. Makes it hard to eat, talk, even brush my teeth, spit, swallow...It's like having a big lump of lazy meat in my mouth that's attached....lol

Yeah, in terms of Lupus thing, my main area is the joint pain...I have had a rash in the past, but it only last a day or so...I do have a pimply rash on my scalp, but I don't think that it's from that...

How does the prednisone help with your rash? I don't take prednisone for the joint pain, but rather the MG...I don't have a diagnosis for the joint pain, but I have Lupus antibodies...Anyway, one of the first reliefs I got was the joint pain...Don't have it at all anymore....I do have some pain in my back, but that's from something else...

Anyway, hope to hear from you soon! Has the doc. ever considered a plasma exchange for you?

Nicky

Hi Nicky,
Glad to hear your plasma exchange went well. My Doc has mentioned that to me. So far haven't needed it I guess. Don't know for sure. I'm not sure how the pred helps me but it does. This course was needed because one of the Docs in the hosptial put me on Pred for a bronchial thing and took me off too fast. I think that cuased a flare of the Lupus rash. So I'm just taking 10 mgs a day and the rash is starting to calm down.

I worked last night. Tough gig but made it through. It has been snowing here all day. We have over a foot on the ground now and it's still coming down. We're not used to that amount of snow this early in the winter. It does look really pretty.

I hope you have a great Christmas (if you celebrate) and a great 2010!! I'm hosting a party on Xmas Eve which I do every year. I actually got married last year druing the party. We surprised everyone. No one had any idea!

Ellen

Hi Ellen,

That's great that it works so well for your Lupus rash at a somewhat lower dose. I guess prednisone works very well for Lupus-type problems since the disappearance of my joint pain was one of the main differences I noticed almost right away...On the other hand, it had sorta gotten a bit better in general just prior to my thymectomy...Who knows what worked, but something sure did...How is the prednisone helping with your MG, if at all? You mentioned that you got hit again in September; which areas are most affected now (and sorry about that, btw :().

We don't have too much snow here yet in Toronto...It's been coming down a touch, but only enough to paint the city a bit white- fades away by the next day...I hope that it snows a bit more for Christmas, just for that ambiance.:)

That's excellent that you had a gig...I hope that your Christmas is great too and that Santa or someone brings you an autoantibody action figure that really works (just kidding...if only it were that simple! lol)...That's so cool that you got married on Xmas eve- that'd be the best Christmas Eve ever! :D

Take care-- oh, by the way, you said that you were on Cellcept- how's it helping the MG? I guess you may have just started it and maybe it hasn't kicked in yet? Anyway, ttys!

Nicky

I am a teacher and have sometimes had the same problem--just couldn't get my mouth to work. It's called dysarthria and it can be a result of MG causing weakness in the tongue, jaw, etc. Sometimes talking more slowly and pausing a bit more can help. I have this sometimes coupled with shortness of breath and it's really embarrassing to be in front of a group of people having these sx--I can only imagine what it would be like to be on the radio! I don't know what to suggest, except what I said above. I would assume that maybe making sure you don't eat anything that's hard to chew and perhaps resting and not talking for a while before you go on the air would help. The fact that you haven't had it much since that one time is probably a good sign. Perhaps you were just really tired that day. I do hope it doesn't occur again for you.

Hi there! Right before I was diagnosed I was having trouble with speech and swallowing...I would have to really concentrate on what I was saying and speak veeeerrrrrryyyy sssslllllooooowwwwlllllyyyyy....It was embarrassing to start drooling or for whatever liquid I was trying to drink to come out of my mouth as I was talking!! My doc told me that it is one of the signs that things could get a little ugly sooner than later (crisis). The next thing for me was the lovely gift and surprise of not being able to open my right eye...aaaahhhh...MG, the gift that keeps on giving ;) How are you doing now?

I have only had two brief, 5 minute, episodes. I am thankful and am just hoping and praying for no more extended problems. Thanks so much for your comments. They are appreciated.
Simon