Hi everyone,

I recently found these forums and it's been so helpful reading through the threads! Everyone is so kind and supportive.

I had a question that maybe someone with more experience with doctors could answer for me - I recently started seeing a neuro about problems I've been having for years. He ordered some bloodwork, including an acetylcholine receptor test, and then set me up for an EMG. After the EMG and the bloodwork came back, he called me and said my bloodwork "was consistent with" MG. He didn't mention the EMG.

Anyway, so I was sick in bed at the time and didn't care enough about anything just then to question him. He put me on prednisone and mestinon, and I have a CAT scan to check my thyroid scheduled, and then a followup visit with the neuro. I won't realistically be able to speak with him until the followup, which is a month away.

So...would all this suggest to you that I am diagnosed with MG? He never said "You have...", so I don't want to jump to conclusions. But the symptoms I read here fit and I'm on the meds. Maybe it's a silly question, but...Am I diagnosed?

Hello and welcome.

I am surprised your Dr. put you on those meds without further testing but since he did, I would think that means you are DXed as having MG.

Call your Dr.s office tomorrow and ask the person who answers the phone what your DX is, she/he should be able to tell you. But the only reason mestinon is used is for MG or for soldiers who have been exposed to some kind of nerve gas {at least that is what I have been told}

Have you noticed a differance since starting the meds? What dosage of them are you on?

Please feel free to ask us anything, we all learn from each other here.

Joanmarie

Hi Jigoku- welcome!

I'd say that it does sound like you've been diagnosed, especially since the doc. is starting you on meds.. Mestinon is almost exclusively used for MG, and prednisone is used for MG too to counter the immune system's attack on the achr receptors.

The blood test you got is diagnostic for most people with MG, although some people with MG don't have detectable antibodies. It's very unusual to have a false-positive for this blood test, so it's pretty specific, although false positives DO occur, but again, pretty unusual. I'm sure that your sx, the blood test and possibly your EMG have all helped the doc. in coming to the conclusion that you do indeed have MG.

What are your main sx?

Anyway, the people on this site are very supportive, and you have a new place here. Let us know about your concerns and experiences, because we can all relate!

Nicky

Hi..and welcome!

It sounds like 'bloodwork consistent with MG' means that they found AChR andtibodies which are sort of the 'gold' standard for MG. I doubt he would have started you on these meds so quickly if the antibody test was not positive.

Sounds like your neuro is really good!! Read as much as you can about MG and begin to write down any questions you have. Most of us have found that really helpful to do before neuro appointments since they are so far apart it's easy to forget to ask a question you really wanted to!!

Sue

Thanks for the replies.

My symptoms include: occasional double vision. Sometimes my eyes slide out of focus and I can "snap" them back together, sometimes the only way to get a single image is to cover one eye. My right eyelid droops sometimes, and my eyes never fully close when I sleep. Slurred speech, mostly during arguments, long conversations/anecdotes, or if I'm eating. Trouble chewing and swallowing when eating tough or chewy foods.

And then there's the general weakness in my arms and legs. Walking is difficult some days, especially if the ground is uneven at all, or if I'm cold. If neither of those exist, I can shuffle along, but slowly. Not every day, of course. Some days I walk just fine, for miles. My arms are similar to my legs.

I will call the office tomorrow and ask the receptionist what she knows about my status.

Oh, and I forgot to answer JoanMarie - He prescribed me 20 mg of Prednisone once a day, and 1/2 to 1 tablet of Mestinon (60 mg) three times a day. My pharmacist recommended I start with 1/2, so that's what I've been taking.

This is only my 3rd day of medication, but I do feel better. I hesitate to say it's working though - it might just be a good stretch. I'm still waiting to see.

Hey Jigoku,

Welcome to the group! Your symptoms do sound typical of MG. I think it was wise to start out with half a mestinon and working your way up to a whole tablet. Did you mean you are having a CT scan of your Thymus? That would be the standard test to have. I hope you continue to do well on the meds and please keep us posted. Again welcome and ask anything you want. Everyone here is very helpful and friendly. Take care.

Hugs,
Pat

Avoid extreme temperatures, especially the heat. Rest as soon as you feel weak or tired, if only for a few minutes. Longer is better. Try putting cool compresses on your eyes, it may help for a while.