i got the antibody results back and that one is negative. . .but after reading on here about variability in morning and night, my husband and i have been testing my leg strength in the morning and the evening over the last week and my legs are about 50% of a normal person's strength in the morning and then they drop to almost no strength in the evening. i mean can barely lift my leg at all, like maybe 7% strength. and i need help up the stairs often and have some trouble walking but only in the evening.

they aren't expecting the other blood work(MUSK?) back from Athena labs until the first week in may. i sent a ct of my chest from an urgent care visit last month into my neuro that takes care of my migraines to see if he can visualize any issues with my thymus in the meantime . . .

but i seem to be getting worse. . .any other ideas??

You said "that one is negative". Did you mean those THREE are negative? (Binding, blocking, and modulating?) If they didn't run ALL three AChR antibody tests, they SHOULD!!

Hi, I'm so sorry you're going through all this.
I just wanted to pipe in and let you know that ALL Tests for MG, can come back negative, and you still have Myasthenia Gravis.
You can also have a negative blood work this time, and during the next flare, it can be positive. I'm so sorry to have to let you know that, I know it just adds to all the frustrations.
There are other conditions that can cause some of the MG symptoms, anything from Narcolepsey right down to Diabetes. Some Auto immune diseases..etc.
But you do sound like the classic MG patient. If you have any questions at all, you're more than welcome to ask me. You can even send me a private message if you like.
Please know, many many MG'ers have been where you are. I was first sero-negative, and then sero positive.
Most importantly, seek out a specialist who has other MG patients, and is familar with understanding the symptoms of MG. Not all Neuros are a like unfortunately.

Love Lizzie

Thank you so much for responding Lizzie!

I am still trying to get answers and it has been really frustrating. . .it took a week to find out they could not locate the CTA of my chest I sent by courier and I had to get a 2nd copy and hand-deliver it only to find out that neuro won't comment on it until all the results are in. Why would that be?

I let my neuro know all the symptoms that were MG related and he said that even if all the tests results come back negative, he wants me to go to their neuromuscular expert now. So that is news. I guess there is enough to be moving in this direction at least.

Another question, I realized that over the last few months I cannot really yawn anymore but have not told anyone. I can't get enough breath down in my lower belly. It is like it stays in my throat and nothing happens. . .does that have anything to do with MG?

Thanks again. . .

I remember having trouble yawning when my MG was at it's worst, I assume that it is related to MG. I haven't had that happen since I started Mestinon.

I hope you get a diagnosis soon. Keep us updated.

Yes, I still get the yawning problem. I also have other lung issues going on. I always say, I'm so glad I never smoked, other wise I'd be in need of a transplant.
It does sound like your doctor knows enough about MG to send you to the appropriate doctor.
I sure hope you'll get a fast diagnosis, and then on to treatment. I had a fast diagnosis, and I just can't imagine waiting long to get treatment, that would be horrible. It was bad enough sorting out all the combinations of meds to find one that worked.
I really feel for you.

Love Lizzie

Hi, Art Chick. Do you have an "informal" name?

Everyone has given you great advice and support.

I'm concerned about what you said about getting a breath. When you sit up straight and take a deep breath in, can you see your abdomen/chest go in and out? Does it feel like you are breathing against something? Like you can't get a breath in? Often when a person yawns, it can be the same as taking a deep breath. If you have MG and you can't take a breath in very deeply, what is called your Maximum Inspiratory Pressure (MIP) may be greatly decreased.

Two things: It's Friday, so you can't call for an appt. But on Monday, I would highly recommend you ask your internist or neuro to get you into pulmonology ASAP. You need to have your breathing evaluated completely. And not those little simple spirometry tests where they only do breathing out. You need full PFT's. And if they do the MIP and MEP (maximum expiratory pressure), they need to show your neuro ALL of the attempts and not only the highest number. MG is all about muscle weakness that gets worse the more you do. If numbers on MIP or MEP keep going down the more you do it, that's one more piece of the puzzle. It also shows if you are doing okay/are stable or are not doing well.

MIP and MEP, BTW, are specifically for showing if you have a neuromuscular cause for inability to breathe well.

Second, If your breathing gets worse in any way, if you feel like you cannot get a full breath in, you really need to go to Urgent Care or the ER. If it's really bad, then the ER is the best place. For example, do you know your normal pulse? When breathing gets bad in MG, the heart works harder to get you more oxygen. Then the heart rate (pulse) goes up. Can you check your pulse? It's normal for a pulse to go up when someone does something but if it gets crazy high when you simply stand up, you may be having trouble getting oxygen due to weak chest wall muscles.

I'm sorry but there's no simple way to say all that.

You can have MG, like these guys have said, and not have positive antibodies. Are you on any other drugs that may interfere with the test (like steroids)?

Yawning is also one way the body tries to get more oxygen to the brain.

I really hope you get answers soon. You do have the right to know your test results or receive your medical records in a timely fashion (by law).

Annie

And from now on, ANY new symptoms and you NEED to tell someone - mainly your neurologist!!! Okay?!!! Not telling a doctor you could be getting worse is dangerous for you.

Thanks everyone. . .you are helping me sooooo much!!! It is hard to know what is important. I have so many things going on that I thought the yawning thing was minor so. . .I mean wow!!

Great questions Annie: I tried the breathing test and I cannot get my belly to expand while standing up. But I can belly breathe just fine while lying down. Otherwise, it seems like it is all in the chest and not very deeply but deep enough I think.

I did have a strange experience last month with my pulse jumping up to 157 for no reason and I ended up at urgent care. It kept going up and then back down in the 90's and 100's for 24 hours. We thought I was having an adverse drug reaction to sulfa in the diuretic I was starting. WE stopped the diuretic. They thought it could be anxiety too but I wasn't having any anxiety so they just sent me home. They did check my heart rate and put a thing on my finger. Would that have been sufficient to assess my oxygen levels? Or might I have been having some kind of MG crisis at that time that was overlooked?

I am not on steroids. I am on a diuretic/potassium, abilify, and topamax. Are any of those any issue?

What is a full PFT stand for? Just so I know what I am asking for. . .

Thanks again so so much!!

debra

Thanks, Debra. Nice name!

PFT is Pulmonary Function Test.

Diuretics can make MG worse. Don't go and stop it!!! It "might." MG can potentially be made worse by a number of drugs, like antibiotics.

The thing on your finger was probably an oximeter. It shows oxygenation in percentage and your pulse.

Hard to say what the pulse rate was all about. Your electrolytes could've been off but I'm sure they ran those. Did you get a copy? It sounds like you had a supraventricular tachycardia. That could be caused by a medication.

http://emedicine.medscape.com/article/156670-overview

Abilify might be contraindicated in MG. Hard to say, since it's relatively new. But read the side effects!

http://www.drugs.com/abilify.html

Can I ask why you are on Topomax? Is it for migraines?

One drug in and of itself "might" be a problem but when you put a bunch of drugs together, it's hard to say what they might do to you! Have you spoken to your pharmacist about all these drugs to make sure they aren't contraindicated in MG or there isn't a potential for drug interactions?

I hope you find answers soon. Write down any symptoms you are having. Keeping a journal is very helpful. Do you have ptosis (drooping eyelids)? Sometimes it helps to document things like that with photos.

Annie

I am on the diuretic to hopefully help my Meniere's Disease symptoms which are mainly tinnitus 24/7 and progressive bilateral severe hearing loss. I just got my potassium levels checked and the results are perfectly normal so no problems there. I know it can be an MG issue but I thought it was about the potassium . ..are you saying that just being on a diuretic would interfere with a PFT?

yes, they ran the electrolytes, etc. everything was normal.

topamax is for the migraines and the pharmacist knows all the meds but no one has heard about the MG possibility since this is an idea in its infancy.

yes, i have ptosis. . .comes and goes.

Maybe I should call the pharmacist and just ask .. . debra