Is it time to panic???
 

Hi everyone...and firstly Merry Christmas!! I hope you have all been well and managed some form of celebration :)

As I posted a couple if weeks ago, I took my daughters to Disney at the beginning of December which wiped me out and caused my mestinon to stop being so effective.....fast forward to now, and mestinon is not working at all over the last couple if days. I know Christmas can be stressful but I planned a low-key one and have basically done nothing except pop to my Mum's for lunch....and she lives next door!!! All social plans keep getting cancelled as I continue not to improve!! I am back to square one where I feel ok if I literally do not move for a couple of days but as soon as I try to gradually do things, my symptoms hit me back down again! I am still holding out the hope that the combination of Disney and now Christmas are responsible and that I will improve in a week or so....but I wondered what your thoughts were??

I have only been on mestinon since September...can the effects wear off this quickly?????!!!!

Being double sero-negative and diagnosed on clinical symptoms and mestinon response alone, I am scared to go back to my Neuro! He said if this happened I would need an SFEMG and I have read enough stories if how unreliable that test can be.....and those who've had diagnosis removed!! And, I was so positive that mestinon would be enough!!!!! :( I can't face another round of Dr's and tests and all the confusion surrounding MG!!

Please Help!!
Eve.x

I'm sorry that you are having a hard time.

Mestinon quit working that well for me and my neuro put me on cellcept. So far it is working much better.

so sorry your not doing well, it's all so frustrating.. and I know what you mean about being seronegative and worrying.. It'd be so nice to have a definitive answer so my mind didn't wonder as much about the other possibilities - that m ight be the worst!

I also understand not wanting to go be poked and prodded and retell the story etc etc.. it's not fun at all, and super frustrating if you don't feel like your listened to.. but that being said, it's important to be your own advocate and get the best treatment so you can feel better and do the things you love.. Good luck, keep us updated!

It was exactly one week before Christmas a year ago that my MG took a turn for the worse. Prior to that my MG had good days and bad days and spells when I felt almost normal. I think it was the stress of last Christmas that made my MG hit a new low level and I started falling. I never have periods when I feel almost normal anymore.

They upped my mestinon and that helped. They put me on pregnisone and I felt a big improvement. Since then I am down to 10mg of pregnisone every other day and I am now on cellcept too. My MG is much more stable and I have not fallen in 6 months.

I would call your neuro and let him know how bad you feel. It may be time for an immunosuppresant. I have had no bad side-effects from cellcept but it takes a while to work. Pregnisone can give you fast relief but it has severe side-effect and the weaning off process was horrible for me.

Hope you find some relief soon
kathie

At Mayo they used a different test to confirm my MG. They sent me to the eye doc there who had me match spots with laser pointer and special glasses. Then they injected a small amount of tessilon and redid the test.

I don't know if they can do the same test for you locally or if its their own test, but it would avoid the single fiber and is probably more acurate anyway.

Also, don't panic. It'll only make your symptoms worse.



I wasn't real happy with the SPS testing the did, though. She admitted to me that now that I'm on treatment for it, it'll be impossible to real diagnose, though. So I guess I was warned. Their blood testing came back high but not off the chart (probably because of the immunosuppressants), and the single fiber tests came back negative (probably because of the valium). Even though their own criteria says that a positive blood test is positive, whether its borderline or off the chart, and that there are sero negative SPS patients, she said that she had to call it probable well controlled SPS.

To my mind, there's nothing probable, and well controlled is debatable since my neuro wants me to keep cutting down on Valium (was at 45mg, I think she wants me closer to 30mg), but I'm feeling sore and stiff so I'm edging my way back to 60mg (where my cardiologist wants me). I'll need to convince my neuro I'm on the proper dose, though, since she's writing the scripts. The last script was for 70mg, but she said I should be cutting it down :confused: Sorry to hijack your thread.