I was diagnosed with generalized MG in November 2008. My intial symptoms of limb weakness appeared in August 2007. From 2007 to 2008 I went from limb weakness to eyelid drooping, neck weakness, garbled speech, shortness of breath and trouble swallowing. When I was diagnosed I was started on Mestinon 60 mg 5x/day, Azathriopine 100 mg 1x/day. In January I had a crisis and was given IVIG and started on Prednisone. In February I had the thymectomy done. Currently I am on 15 mg 1x/day of Prednisone and the Mestinon and Azathriopine are the same.

I still have limb weakness and 8 weeks after surgery my eyelid has started to droop again. Thankfully I have not had any more problems with swallowing or breathing.

I would like to know if going for 15 months between symptoms appearing and my diagnosis without any medication, does that affect your muscles to the point where you don't get the strength back?

Hi. Have you spoken to your neurologist about the eyelid drooping again? What if it means you are better and need to back off of meds? And if you are worse, he needs to know that too!

What sucks about MG is that it is considered to be a progressive disease. It can "level off" at some point and go through phases of being worse or better. But those little antibodies do create destruction at the neuromuscular junction and you end up with less receptors. Don't let that upset you because people do level off or get better.

The most important thing to realize is that drugs help but management of your activities (getting enough sleep, staying out of the heat, not doing too much, etc.) will help a lot too.

I think having a conversation with your neuro, especially since the warmer months are here now, is a good idea. Don't get discouraged!!!

Annie

Hey hon! Have you told your neuro about the eyelid drooping thing? That happened to me as well, and I went in for the plasma exchange.......not fun, but not too bad!

It sounds like you MAY need pred or something like that just to balance yourself for the time being.......

As for me, I have never been off meds since my dx - I pray for it but it hasn't happened yet - but it WILL! Just like you WILL get better and stronger!!!!!

Big hugs!
Erin

Thanks Annie and Erin.

Hi,
Technically Myasthenia is not considered a progressive disease like MS. But many MG'ers would argue with the experts on that point.
Symptoms for MG will Wax and Wane. It's so important to keep up with your Neuro appts. Call them today, and let them know what is going on. The last thing you need is a crisis. It's Not fun. I was put on a Ventilator back in January, and although it wasn't as bad as my imagination thought it would be, No one wants to go through it, so preventive medicine is important.
It sounds like you're entering a flair, and may need some meds, asap.
I can't stress enough to get a hold of you Neuro. Your strength should return in your muscles, but it may take a while. I know, I walk on eggs with mine all the time.
We are all at different levels, and MG affects us all so differently. But one thing is clear, never be lax in getting help. It really can make a turn for the worst fast.
My heart goes out to you. I know this is all so new to you, and there is a lot to learn, but take those steps one at a time, and don't be shy in asking questions with your Neuro, a Neuro worth his/her salt won't mind at all.
Best of Wishes,
Love Lizzie

It's never too late to be who you might have been.
George Eliot
English novelist (1819 - 1880)

I guess I should clarify the "progressive" statement.

Some people with MG get diagnosed early on. They get drugs that help stop the antibody process and, therefore, the destruction at the neuromuscular junction.

Then there are people like me who weren't diagnosed well or soon enough and have relatively more damage.

Some research says that the damage is only about 1/3 of the junction. Others say it is indeed progressive and can damage the entire area! Now, please remember that I am not a doctor. Although I have read umpteen articles, books, etc. from medical libraries on this.

One more thing about this acetylcholine thing. You have less of it as you age. So, even if your disease process levels off, you will get less muscle juice as you get older.

Yeah, Lizzie, as you can tell I totally disagree that it's not progressive! And no two people are alike. I don't think anyone can really generalize about people with MG. It would be nice if we - or our disease - were all that simple!!!

Annie

I agree with Annie, this disease does indeed demonstrate progression, with many variable changes along the way...& I'm one of those who wasn't dx early enough to protect what was left of those neuromuscular junctions....& no one recognized that my dypsnea could be at times life threatening, & I tried to get help.........
.
QUOTE:
The course of disease is variable but usually progressive. Weakness is restricted to the ocular muscles in about 10% to 40% of cases. The rest have progressive weakness during the first 2 years that involves oropharyngeal and limb muscles. Maximum weakness occurs during the first year in two-thirds of patients. In the era before corticosteroids were used for treatment, approximately one-third of patients improved spontaneously, one-third became worse, and one-third died of the disease. Spontaneous improvement frequently occurred early in the course. Symptoms fluctuated over a relatively short period of time and then became progressively severe for several years (active stage). The active stage is followed by an inactive state in which fluctuations in strength still occurred but are attributable to fatigue, intercurrent illness, or other identifiable factors. After 15 to 20 years, weakness often becomes fixed and the most severely involved muscles are frequently atrophic (burnt-out stage). Factors that worsen myasthenic symptoms are emotional upset, systemic illness (especially viral respiratory infections), hypothyroidism or hyperthyroidism, pregnancy, the menstrual cycle, drugs affecting neuromuscular transmission, and increases in body temperature. END QUOTE

the link for the above is from the MGFA home page:

http://www.myasthenia.org/hp_clinicaloverview.cfm

Rezmommy, I'm going to add more info onto Korbi_doc's other post.

I hope you check with your neuro about how you're feeling!

Annie, and all,
Yeah, I'm kind of on the fence but leaning towards progression, on whether or not it's an actual progressive disease. The experts will say no to it being "tech.." progressive like MS, or like diseases. But maybe thats the problem, they're comparing it to other neuro muscular diseases, and maybe they shouldn't.
I let mine go too long, and I feel a lot of damage was done to me too. With meds, I feel I'm not as fragile as I was when I was first diagnosed, and yet, I have some areas of muscles that feel much more weaker than they were in the beginning. Now, whether this is progression, or muscle wasting from not being used, I just don't know.
For myself, I feel there needs to be much more research, and understanding, before they keep this as an "Unprogressive" disease.
The sticking point for myself is, if it's not progressive, then why do many MG'ers believe they noticed a slow weakening years before an actual trip to the doctors was made. And I know of many, who are much worse, than when they first went to a Neuro Muscular specialist.
Either way, It's an awful disease to live with on day to day basis.
I'm so thankful, I have a wonderful Neurologist, and team of doctors, it really makes a difference. They've given me so much material over the years to read. Being completely knowledgable makes a huge difference in how we deal with living with this monster.
Love Lizzie