Just got over 3 days of the flu with high fever(102), headache and body aches. I had been doing pretty well overall, but now I am weak, have bad double vision and swollow/choke issues. I called my Neuro's office and was told that I could not increase my mestinon until I was seen by the doctor. I am currently on 60 Mg 4 times a day but it is not really helping me later in the day. I have an appt on Tues to see the PA.

I am a bit discouraged as I had been able to cut my mestinon down to 30 Mg 3 times a day. I had also tapered off prednisone 6 weeks ago. I don't know what the plan will be as I have also just been diagnosed with severe osteoprosis, so going back on prednisone wont be an option for me. I guess I thought I would be one of the mild MG cases.
So many of you have been through so much. How do you do it?

I am now only working 2 days a week and it takes days to recover. I don't really go out much anymore since I can barely drive and travel/vacation is impossible. I am seeing 4 doctors on a routine basis now. I never thought I would be this person. My life is getting smaller. And smaller.

Sorry for the rant. My family is great but dont really understand what I'm going through. It is nice to know that you get it

Sandy

Sandy, I can sympathize. My world is getting smaller too. And not seeing an end in sight, makes it very hard. The part I miss the most, is that it is summer and I can not even take a vacation or even a day trip to the shore. My days off from work, consist of blood tests, medical procedure and doctor visits.

I have been lucky in that I have not caught a virus since the MG has gotten worse, even though I have been on high dose steroids for 4 months. I am kind of dreading the winter with icy sidewalks and infectious coworkers and kids. When my MG started, it would wax and wane, but I have not had a good day in a long time. It makes me wonder when I will see one again.

Did you ask your neuro about a long-term non-steroid anti-inflammatory like cellcept? I think I am going to ask my GP to up my Effexor (anti-depressant). I am feeling extremely exhausted and stressed since they started to wean me off the steroids.

Hang in there, the heat of the summer is almost gone and we should feel some MG relief soon.
kathie

Thanks for the encouragement Cait. It is hard to see life going on around you and you keep feeling worse and worse. I am afraid my vision soon will prevent me from working at all. I have an hour drive and that is becoming more difficult at the end of the day. My patients give me such a boost, seeing them is great for my mental health. I would hate to give that up

I am not sure what direction my treatment is going to take now. The prednisone was working wonders. I will ask about cellcept or imuran.

I hope you are feeling better soon. Hang in there! There are many here who care about you!
Sandy

Ah, Sandy...I am so sorry to hear that you've been unwell. I wonder if it's time for you to stop work for a while...? I'm the voice of experience because I fought and fought to stay working. I do wonder, sometimes, had I "listened" earlier, would I have found life at little easier? Who knows....
Get better....

Fortunatos
I am a fighter as well. I am making work as easy as possible on myself. I have 2 one hour rest periods built into my day. I am not taking any more new patients at this time either. I do know that I may need to stop for a while. I really do want the best chance to go into remission
Sandy

Thanks Sandy, It seems cellcept is the the preferred non-steroid immunosuppressant with Imuran a close second for MG. Unlike steroids, it can take months to feel relief.

I think I am going to try a new neuro. I do not feel I have a satisfactory direction in the treatment of my MG.

Prednisone worked well with me too until I started to wean off. I do not like the "moon" face and worry about the osteoporosis. Work does give my life a routine and something to focus on besides my MG. But I think I will be cutting back hours before the winter sets in. I had a terrible fall and ended up with my leg in a brace last winter.

I still want remission too! My neuro does not think thymectomy is warranted unless your scan show a thymoma. Most statistics say a thymectomy helps most patients with or without a thymoma. Did anyone hear go to John Hopkins and have a neuro that believed in the benefits of a thymectomy? If so, please let me know the Drs name.

They found nodules on my thyroid and I go for a needle biopsy next Wednesday. My gastro who originally thought I had Crohns, said the Celiac and Crohns test were negative. She thinks the rapid bowel transit is due to lupus or mixed connective tissue disease and is sending me back to the rheumy.

Thanks
kathie

ugh, illnesses are soo much harder with a baseline neuromuscular issue - I'm struggling to get over this upper respiratory infection plus UTI right now too.. misery, and scary too!

I hear ya about work... before I crashed and ended up in the hospital for a week 2 years ago, it was all I could do to just go to work for one day and then it would take me 3 days to recover. the last day I worked before I crashed, I made it 3 hours and couldn'dt hold my hands up to the computer, vision was wonky and couldn't stand up to talk to people.. I couldn't swing my arms when I walked as my shoudlers had no power.. IVIG has helped me get through the days at work, though some good and bad... I agree with you - mentally I benefit from going to work.. but physically it takes it's toll... If I wasn't the bread winner and insurance holder for my family I'd go part time if I could.. It's scary having your career on the line, among every other aspect of your life!

Hope you get to feeling better soon!

I work for myself so if I stop I would need to make provisions for my acupuncture patients. I feel I need something to help me soon. I am going to ask about IVIG until the cellcept or Imuran can kick in. I see the PA at the Neuro office on Tuesday.
I also see the Rhuematologist soon to find out about my Osteoporosis treatment.

Thanks to you all for the encouraging words
Sandy

Sandy,

Please keep in mind that in moderate to severe cases of MG, monotherapy rarely works that well. Most often a combo of immune suppressors, a radical therapy like IVIG or PLEX, and mestinon are all needed together. Even then, the sad decision about work sometimes needs to be made.

Good luck on Tuesday!

I just want to say, if the headaches and fever come back, consider the possibility of Lyme disease, which is easily treated if you catch it right away. It's not flu season.

Abby