Diagnosis confimed
 

I found out today, the neurologist says it is MG. My sfemg was abnormal. She got approval from the government for musk antibody testing and had the blood drawn today, sounds like it will take awhile as it is sent from Ontario to Calgary. I am staying on mestinon. She doesn't think prednisone is suitable for me as I am diabetic and when I have been on it before it has sent my blood sugars wacky. She is contacting my cystic fibrosis clinic and immunologist to talk to them about immunosuppressants??? To find out if they are ok with me starting them, she said there are 2 choices. I just wait now. I didn't get a lot of info from her. Thanks for all the support through this diagnosis process.
Meech.

Now the fight really begins. Read and study all you can.
Mike

Yes, I think I will have to do most of my learning by reading. The doc I saw told me MG ONLY really affects people from the neck up?? And so far that's not what I've read or experienced.

I will put my 2 cents worth in here. Mg effects a little more than that. In the mornings one thing I noticed from the 1st, was weakness in holding my arms above my head. After my meds kick-in that is not bad. Your right about most of the symptoms in upper body.
Good luck and get the proper meds.
FREDH

Your doctor might have meant that MuSK MG mostly affects muscles in your neck and head. I'm not sure if that's right--I think it would be more accurate to say that with MuSK MG, the muscles in your neck and head are most severely affected. But even that is not true of other kinds of MG.

Abby

I'm not even sure yet if I will be MuSK positive. So far just abnormal sfemg. I do know I have had very noticeable weakness in my arms that my original referring neurologist that I see said would be due to MG if it turned out to be what I had. When I asked the new neurologist who diagnosed me, she said probably not?? So now I don't know if I should be looking for another cause for that issue.

Weakness in your arms is absolutely on the list of main MG symptoms! Just google "myasthenia gravis" and you'll see. I can't imagine what the new neurologist was thinking. Maybe you described the weakness in a way that didn't sound typical of MG to her? Or maybe she thinks that since you tested negative for the AChR antibodies, you must have MuSK, even though you haven't been tested for it yet? If she thinks that, she's also wrong, because there are many of us here--including me--who have a diagnosis of MG but have never had a positive antibody test of any kind.

Abby

That's what I thought, that arm weakness was a symptom and she couldn't have been confused by how I described it... She never even gave me the chance before brushing it off and saying she doesn't like everything being put down to MG. She did say though with the abnormal sfemg that it doesn't matter if my MuSK antibody is negative, that I still have MG, I will just be double negative.
Thanks for your replies.
Meech.

Hi, Meech.

I'm glad you have a diagnosis. Many people struggle trying to get the proper help.

MG only affects the head, eh? Super wrong!

MuSK MG can significantly affect the chest wall muscles.

Do you have a MG expert in your area?

Your doctor is right in that not all symptoms should be ascribed to MG. However, they shouldn't be ignored, nor should they be minimized. If there is something else going on, then more investigating needs to be done.

If you have breathing issues, you need a pulmonologist. They work in tandem with neurologists for patients during a MG crisis. Neurologists are NOT qualified to assess breathing! It's always a good idea to get a baseline reading so that the neurologist, the pulmonologist, and you know how far your breathing function has gone if you become worse.

MG is all about muscle weakness that becomes relatively worse with activity and relatively better with rest. It's all about fatigable muscles. It's fairly easy to determine if a new symptom is due to MG or not.

MG can have pain as a secondary symptom, if muscles become weak enough. It's similar to athletes who overuse their muscles and have cramps or spasms. With MG patients, it just happens more quickly.

Whomever you have manage your care, just make sure that you can communicate well with them. It's so important that a doctor listen carefully and be responsive, not arrogant and flippant. ;)

Annie

I've spent 18 months looking for one of those... they are rare as "rocking horse droppings". Whilst the arrogant and flippant variety are dead common!

I do feel "lucky" in a way that my original neuro doc that I see for other issues saw a problem and sent me for testing, and that the new neuro doc during this testing knew about MG and asked the right questions because at that point I wasn't connecting my double vision with my weakness. I know people go years trying to get answers.

I feel this new doc is downplaying the possible problems that could arise from MG. I was given no info on it really from her on what to look out for. While I don't want it to be overdramatized, I don't want it sugar coated either, if that makes sense?

I do already see a pulmonologist for my cystic fibrosis, luckily my lungs are in pretty good shape and I have more digestive issues. The neuro doc is already consulting with him to see if the immunosuppressive drugs would be appropriate with my CF. (she also gave me no info on these drugs except to agree prednisone wouldn't be appropriate) I think she may be the MG expert in my area, but I will check next till I go to my CF clinic as it would be easier if there was someone at the same hospital I could see. Her office is difficult for me to get to.
Thanks
Meech