Eve I think your experience sounds about right. First you have to remember that Mestinon will help the muscle weakness and strength, not fatigue. We have to remember that having a chronic autoimmune condition is tiring by itself. The reason is that it takes energy for our immune systems to be revved up and attacking 'self', thats the main reason we have fatigue and its the same mechanism why we get tired when we are fighting off a cold or flu.

Unfortunately the mestinon will not help with the fatigue. What does help with the fatigue are the medications that calm the immune system such as IVIG, prednisone, Imuran and Cellcept

Its great to hear that the mestinon is helping with the muscle strength. That by itself is also a diagnostic indicator of MG as mestinon really only will help MG.

Joe

Hi, Eve,
Your experience sounds pretty much like mine did. Mestinon gave me instant relief, but as it wore off, the symptoms seemed stronger. Maybe becasue I was doing more, not sure. But, the fatigue was intense. Mestinon helped a bit, but it wasn't until IVIG and Cellcept were added on, that the fatigue started to abate. As of today, I had a rough day yesterday, and I can feel some of the symptoms back today (more than normal). In this case, I'm taking more Mestinon. I'm almost off it, but can't quite kick the need just yet. I was at 90 every three hours, plus timespan at night. Now, 30, every 8 hours, or 5 today, so it does get better.
Hope you contineu to see improvement, and if you need more treatment, know that it's part of the process.
Be well,

I have such a hard time not over doing it. My arms ache today because I used them so much yesterday. It's "Katie bar the door" when I feel good; then I always pay for it.

You will figure this out. Just keep asking questions.

Good Luck,
Barbel

Thank you all for you replies :) It is comforting to know that this isn't unusual and seems par for the course a little?!

Thanks for explaining things to me Joe - I know Mestinon is only a symptom suppressor but I hadn't thought of it like that before :)

I am not sure if I will be offered any other treatments - I go back to my Neuro on Monday to have and MRI of my facial muscles and get the results of that MRI, my antibody tests (MuSK and re-run AChR) and what my Neuro makes of my response to Mestinon. As horrible as the facial droop is at least there is no disputing that the mestinon works?! I am just worried that if the only positive test is the response to mestinon that they be reluctant to diagnose but only time will tell! I know that's exactly how some of you were diagnosed and my Neuro is lovely so I am sure he will do what he can for me and don't think he would stop the mestinon as its working....but I would like an official diagnosis after all these years....especially one that doesn't involve it all being psychological!

Thanks again everyone - you are a huge help and support and I am so very grateful.

Eve.x

We are starved for life. We overdo it when there is the least possibility that we can. Each individual is different, but eventually we all learn to keep enough Mestinon on our systems to avoid so many valleys. I remember when I first started Mestinon and lived by the prescribed dosage instead of what my body needed, I would tell my friends that the coach was turning back into a pumpkin. You'll figure it out. :)

Eve,
In the links group, there are a number of links to scientific papers regarding current thinking and differential of seronegative MG. There are links to the two newer tests that are becoming more available in research settings, although not commercially. There are other antibodies known, as well. The newer test for AchR and the newer studies show that "seronegative" MG responds much as AChR + MG and supports like treatment including IVIG and the more expensive immunosuppressants. So a diagnosis is very important for treatment decisions. A positive blood test makes diagnosis and treatment decisions easier, but negative studies in the face of MG symptoms should not stand in your way. LRP4 is the other antibody being tested and is necessary for proper assembly of receptors, an earlier stage related to MuSK. Remember Mestinon only works on functional receptors, so the sicker you are, the less effective it will be. b.

Glad the mestinon is working! Frequent 5-10 min rests (propping feet up, closing eyes) can help with fatigue.

The more I do, the sooner mestinon wears off. Depending on activity, stress and length of day, my mestinon timing and dose can change.

I'm sure your Dr will have a treatment plan when all the test results come in. Do your research on prednisone, the steroid sparing drugs like cellcept, imuran, tacrolimus and also sero neg. That way you can have an informed discussion with your neuro for your individualized treatment plan. I feel that my neuro and I are partners in my treatment.

Let us know!
-sherry