Hi All, I am new to the Board, I never thought I would be in this spot again. 17 years drug and symptom free and three weeks ago symptoms came back with a fury. Many years ago I was very involved with the MG Foundation in California and learned to be my own expert in my disease. My GP has put me on Predisone 20 mg a day and 60 mg of Mestinon every three hours but the weakness is still interfering with my ability to function. I have an appointment with a Neuro on October 5th finally. Just hoping he has treated others. So Many things have changed in treatment in the last 17 years. I don't know were to start. Thanks for Listening. I really need the support now

Lisa,

Bless your heart. You certainly had a good run and I'm so sorry you're back in the "symptomatic group." Early on in my journey I had a 2.5 year remission (drug dependent) and when I lost that I honestly think it was worse than the original onset of the MG. It's scary and frustrating and sad, and again, I'm sorry you are going through it.

The good news, though...if you've gone into remission once, you can strive to do it again! It may not be the same way you did it the first time, but at least there are options, and I dare say many more than there were when you remitted 17 years ago!

I hope you get started on the way to feeling better with your appt on the 5th. Keep us posted and know you are not alone and you have support!

Hang in there!

Hello there

I can imagine that sudden turn of affairs after such a long time must have been a shock for you.

I lost many of my fine motor skills a few years ago - wasn´t able to play piano, shake a persons hand, pull a small weed, etc over a period of two years due to fatigable weakness. It took a whole year to gradually get those functions back. Now I find myself living in awe and wonder and appreciation just because I am able to type this message with my fingers, play a guitar and piano again, turn pages of a newspaper. What I had may not have been MG but I know I would be very upset if I lost those functions all over again – especially as they are so much more precious when you get them back than they are before you loose them.

I really hope for you that your neuro can put a good light on this for you. Good luck next week

Anacrusis

I never thought about it that way. But, you are right. We no longer take for granted those small every-day things. We work very hard to regain some abilities. Losing them again is extremely painful.

I've actually been thinking about this quite a bit. The SPS meds gave me about three months of normalcy before my body adjusted and they stopped working. I had adjusted to this slow decline, and was hoping they'd find something that would slowly reverse it and I'd regain everything I lost over time. Instead I had a night and day difference and was able to do everything I used to do and started planning out a career and vacations, etc. I was able to get out to a baseball game and thought I'd get back into photography. I'm still hopeful things will get under control, but its definitely harder to regain something and then lose it again then it was to go through it the first time.

Just an update. Went to my GP again today, he is so far at a loss. Bloodwork was OK except my SED Rate was a little elevated and a slightly high white Blood cell count, but nothing off the map. Chest xray is unremarkable. he has increased my Mestinon two 60 mg every 2.5 hours along with the Prednisone. I go the the Neuro on Friday. He is putting me on Timespan Mestinon at night. Hope that will work, years ago I had overdose symptoms with it. Once again everyone, Thanks so much for the words of encouragement.

Lisa

Lisa, I'm sorry you are having to deal with MG all over again. I think all of us hope that it will go away and never come back!

When did you start Pred? Was it recently? Don't forget that while on Pred, a "slightly" elevated white count can mean that it's actually much higher. Do you have signs of any kind of infection? Do you know the actual ESR count?

Do you have any other symptoms that might indicate something else going on? Like a new thyroid condition making MG come back? Anything that makes the immune system work harder can make MG worse or bring it back.

I think the hardest part of MG is the fact that none of us can really predict what it will do. And I can't imagine the absolute relief of getting rid of any signs of it and then having to deal with it again. I would LOVE to get rid of my MG - even if it's for a day or two.

It sounds like you have good care. That's half the battle. Hang in there. You can handle this! I know it sucks but you CAN do it.

Annie

Hi Annie, Thanks so much for the encouragement, it means so very much. My Thyroid was fine and my GP did not tell me what the count was on my WBC. As far as I know I don't have an infection. He wants me to discuss it with the Neuro I will see on Friday. I have been having lots of stress recently and I was exposed to high temputures two weeks ago when my car broke down. I live in Las Vegas Nevada and it is very very hot here. I am hoping that it was a combo of the two that set it off. In the past when My MG was active, the Mestinon and rest would help enough for me to function, but this time is different. Mestinon is at a much higher dosage than I took before and it has been three weeks without much change.

thanks again

During my hospitalization 4 years ago, I had a few days of normalcy, after which I had a rapid down-hill deterioration.

I remember walking in the street and thinking about how I am going to go back to full time work. I enjoyed every step I was able to make, every breath I was able to take, every bite and sip. I remember looking at the people walking on the street and thinking-Don't they realize what a wonderful gift this is.

And then I crashed into the reality...

So, I can understand how 3 months of this can make you think that all is well.

I want to know how people manage to cope with such extreme fluctuations or even normal fluctuations. I was also enjoying my breathing today after having trouble yesterday - I´m thinking that my breathing feels good today but on top of that my brain is enhancing this normally ´ordinary´ function, to an extraordinary level - you´d think it was a brand new discovery! That makes the gap between feeling good and feeling bad all that much wider.

What do you all do to cope with your fluctuations?