Usually when I am talking slow, I am also thinking slow. Brian fog, I guess.

I cough too, and I think someone said that it was one of the medications that we take that causes it. Mestinon, if I remember correctly.

My arms and legs get sore when I over use them. Real achey. I take ibuprohen and that helps, also I have to rest more when I am achy. Today, my arm felt like it weighed 10 lbs.

I can't answer about the "negative form of MG".

I am sorry that you are being symptomatic. I hope everything gets better soon. Barbel

Sounds like you are getting a bit weaker in areas. Be careful with coughing, weak neck and speech problems. Might be time to give neuro a call.
Hugs
-sherry

Sorry Barbel, negative was easy spelling they are thinking it may be the Seronegative MG I have they want to do more testing then maybe put me on a different treatment.
Newmugg went to my Neuro about a week ago she is trying to get me into a local University. Thank you both these symptoms just seemed new in the last couple of months you never know with this thing what is medicine or the disease.

Good luck Bear and keep us posted.
Hugs!

Bear,

As I recall, you have had ocular MG in the past that has recurred and responded well to treatment and have now developed generalized symptoms. Quite a few people with ocular MG do not test positive to the usual blood tests, but the symptoms are classic and they get diagnosed relatively early in the course of MG compared to those who test negative and have generalized symptoms without obvious eye involvement.. That the tests are negative means only that you do not have the antibodies they have commercial tests for, not that you do not have antibodies. There are other antibodies and even tests for some of them and more sensitive tests for the usual one that are not commercially available. But your neuro is probably talking about the muscle testing.

I am not sure why this is necessary given your symptoms and history. Maybe as you are getting sicker, your neuro wants a firmer diagnosis or other confirmation before giving you the more risky medications?? In any case, with generalized myasthenia, you want someone who is experienced with treating lots of MG. Quite a few of us online have seronegative MG. I do; I've had it for a long time untreated and treated and it has gotten worse, and better, and worse, and better. The biggest dangers are breathing problems and aspiration and coughing could be an early symptom, especially if it occurs at night when you lie down.

This means you need to be better prepared for problems than you have been in the past and will probably require more treatment. Please let us know how you are doing and don't hesitate to ask questions. b.

Hello, Bear. Please don't aplogize for griping - that's part of this journey.

I'm so sorry you're having these new experiences. Take care of yourself and let us know how you're doing.

We've got pretty big shoulders if you need to gripe some more :)
-Babette

Bear , never forget that they call this the " Snowfake Disease " because no two snowflakes are the same , and a lot of times no two MG patients have the exact same symtoms. You are doing the right thing by noticing that somethings are acting differantly and getting on top of it quickly. Best of luck , Charlie

Thank you very much Beweeds, the neuro I have there are 3 of them in the same office and they have several people with MG. She was just concerned that it seemed at first last year the medications worked and now not as much and as you said, before she tries something else she wants a second opinion from a University Doctor. As most of us here she ran me thru the drugs over the last year one thing then another. To me it seemed lately things were a little different and my mind was going toward this disease taking a different route. One more thing you have one great memory to remember I had Ocular I can't remember what I had for dinner you made me feel better than my doctor. Bless you!

Bear, I also try to figure out if my symptoms are from the MG, the drugs, or just something else. Be watchful of the symptoms and make an appointment to see a good MG neuro.

Bear, I am sorry you are having new symptoms. I will be praying that your doctor get you on the right medication. I hope you will begin to feel better and able to do what you enjoy doing without the symptoms hindering you. I believe by faith that you will improve. God bless you. Cabbage 7

Bear, I hope your symptoms get under control. I agree with B in that there is a positive side to presenting with ocular signs first. Since we demonstrated eye muscle weakness early in the disease process, our doctors recognized it as MG. The people who struggle with limb and generalized weakness without visible ocular weakness often have a delayed diagnosis. In one way we are fortunate. I started with crossing eyes and double vision at the end of April, and later developed problems with speech slurring, trouble swallowing, and extremity weakness and easy fatiguability.

Sorry. Fatigability. It wouldn't let me backspace.