Do I have it?
 

I am waiting for the antibody bloodwork to come back (it's been a week already) and I am very nervous after reading that great article posted on here about MG. All that stuff about fatigability fits me to a tee: I cannot hold my arms up or my legs, my eye droops, and the voice goes hoarse before counting to 50. Are these SURE signs or could it be something else? I also have intermittent swallowing issues but my main issue is leg weakness without pain that is VERY severe and will not resolve in 4 months. I have had an MRI and an EMG (not single fiber) and both were normal. . .

At this point, they are ready to do an MRI spine if the bloodwork is negative or call it hemiplegic migraine with prolonged aura if the MRI is clear.

any thoughts??

Hi Art Chick! I have been diagnosed with hemiplegic migraine. I never understood how aura could last that long though. And the migraine meds never helped, instead made my symptoms worse... Do you get head pain?

Hi Jaimee. . .I do get migraines and I am on Topamax currently and still get a couple a month but not too much head pain--more on the nausea, light and sound and motion sensitivity end of things. I just cannot understand how it could just go on when the full blown migraine is over for weeks. . .

and all the other stuff is not migraine, right? so. . .do you have hemiplegic migraine and mg as well?

I have not been diagnosed with MG. I am in the process of trying to get all this sorted out. Have been dealing with it for 3 years now. My neuro tested the acetylcholine binding antibodies and they were negative. But from what I have read here, it's still not ruled out. But that's what I always wondered about the migraine thing too... How in the world could it just go on and on and on without letting up? Seems like a stretch to me.

Jaimee and Art Chick,

I am not officially diagnosed. My antibodies are negative, both the AChR and MuSK. My EMG was normal. My single-fiber EMG was "borderline."

Nevertheless, my neurologist thinks I have myasthenia gravis, just because of my symptoms. My symptoms aren't even that classic! My most troubling symptom right now is lack of balance that I think is caused by weak hip muscles--I tilt back and forth from the waist when I walk. I also have weak neck muscles and weak arm muscles. These symptoms mostly improve on Mesitnon. I had double vision once, before I started taking the Mestinon.

Anyway, I'm telling you my story just to show that different neurologists handle these things very differently. My neurologist is sending me to a mg specialist, but he's so sure I have mg that he's willing to start me on Prednisone before I even see the other specialist.

If your bloodwork comes back negative, but you're convinced that whatever diagnosis you eventually get is wrong, don't be reluctant to ask for a second opinion. My neurologist knows that some mg patients have negative blood tests.

That is very interesting... So is it normally a Neurologist which would do the diagnosing for MG, or would a Dr in another field be more likely to look at it as a possiblity in the absence of typical testing?

Hi Jaimee,
I am seronegative but was diagnosed with MG on the basis of symptoms and single fibre EMG. I hope that your road to diagnosis is quick. My first symptoms appeared in Aug. 07 and I was diagnosed in Nov. 08.
Take care ~ Melanie

Jaimee,

My understanding is that it's a neurologist who would diagnose you with MG. However, there are some neurologists who specialist in MG. The one I'm going to specializes in "neuromuscular disorders." One way to find a neurologist who specializes in, or has experience with, MG is to write to the muscular dystrophy association. MG is not a kind of muscular dystrophy, but the muscular dystrophy association has MG as one of its covered diseases.

The website is mda.org. You can click on the "contact us" button at the bottom. I emailed them, and it took a couple weeks to get a reply because my email ended up in someone's spam folder. So it may be better to call.

I hope you can get some answers! My biggest nightmare--bigger than even being diagnosed with some horrible progressive disease like MS, or with a brain tumor--was having the doctors think I was making it up while I got steadily worse and worse...so as bad as MG is, at least it's a diagnosis.

Abby

omg. . .i didn't know the antibody test could come back negative and i could still have it. i really hope for a more definitive answer than that. this all started for me a long time ago.

in the winter of '06, i couldn't walk for 2 1/2 months and no one could figure out why. the stress was so bad i stopped sleeping for a month and had shaking also that has now returned that no one can understand (non-epileptic). i was given an anti-psychotic to sleep so i wouldn't become psychotic from lack of it and i was able to walk slowly thereafter. fastforward 3 years to attempting to get off the meds began the shaking again and leg weakness and now the meds won't work anymore. now they are finally interested in what is the actual cause of it all.

my right leg gives out intermittently, my balance is crap, i'm dizzy and nauseated a lot, and my left eye droops on and off. my arms get tired washing my hair, i pant after climbing the stairs sometimes for no reason, i get things caught in my throat sometimes. i have progressive bilateral hearing loss and tinnitus 24/7 and they think i have meniere's disease too now along with migraines. i mean this has been an absolute nightmare. but after reading about mg, i really think it fits in a very eery way. i don't know if other things are like that and i just want this to end????

Art Chick, I'm surprised you haven't heard results yet... Maybe they did what people here suggest and actually sent it out to Mayo or somebody who knows what they're doing. I'm sorry you're dealing with this. I understand!

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!!

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.

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

Did they give you a reason for the hearing loss? Did you know that people with undiagnosed Celiac Disease can have that happen? Have you been tested for that?

No, the diuretic would not "interfere" with the PFT's.

It's just that some drugs make MG worse. If, and I mean "if," the diuretic makes MG worse and you have MG, your PFT's will be worse. But it wouldn't interfere with results. Make sense?

This is going to sound stupid but it's not. Sometimes Meniere's or just plain old tinnitus or vertigo can be caused by pinching of nerves in the spine. My Mom had vertigo, had physical therapy and was better after a few sessions. She hasn't had it since. Just an example. Doctors often throw drugs right away. Not that drugs aren't useful but it's easier than trying to figure out "why" something is happening.

The hearing loss is due to the Meniere's disease they think. I go to a chiropractor already who is great. I have wicked tinnitus and a gair amount of dizziness but I haven't had vertigo since last July I am happy to say. . .

I have been tested for Celiac, I don't have that.

I checked the heartrate issue this morning. 60 at rest and 111 when I stood up.

debra

Does the ptosis and weakness occur with your migraines?

Debra, That's quite a jump in heart rate for just standing up. Usually the body can adjust itself and will not have a jump higher than 30. Usually, according to medical sources, it's a lot less - like a 5 - 10 increase. Make sure you let your internist know of that.

I hope you get answers soon.

Annie

Jaimee--I have the ptosis and the weakness all the time and the migraines only about 1 x month right now. . .

Lizzie--Thanks. . .I am trying. It's a lot to read and take in, especially while on an emotional rollercoaster but I am working on it : )

Annie--I notified neuro and the test results are still not in today but they are expecting them any time. They want to see them before they order anymore tests but they have it all down.

Yesterday, I lost the ability to walking the afternoon and it lasted until morning--definitely my worst day yet. And I could not even lift either leg off the couch. I cried a lot. It was a very bad day.

At this point, I am hoping for a definitive answer so we can move forward fast. I am really scared.

debra

Debra, You couldn't lift either leg off of the couch? How long did that last? No wonder you are scared. Were your arms weak too? Was it hard to breathe?

If the answer is yes to all that, you probably should've gone to the ER. The inability to move a limb is a sign of an MG crisis. It doesn't matter if you don't have a definitive diagnosis yet. Please go in if that happens again.

Annie

I don't mean to be confusing . . .I mean I could not lift either leg in the air off of the couch to test the strength which we normally do each evening. They were not paralyzed or anything. My right leg was the main issue and the knee would not hold. It had no sign or symptom, it just would not hold any weight and I would just fall with no warning.

My arms tire easily with repetitive motion but I have never tested them except that one fatigue test where you hold them out for a minute or 2 and I couldn't do it. They dropped before time was up and I was breathing heavy. This was a week or so ago.

I am breathing ok still thank goodness.

debra

Well, when I had my crisis, I couldn't lift my legs up either. I still think that is worth calling your neuro about. Don't dismiss this kind of situation. In MG, it can get weak so slowly that you don't actually notice. Then other times it can tank rapidly, especially when you are as weak as you described. If it got to the point of your legs being so weak they were "paralyzed," you would probably be near death!!!

I'm not being dramatic. MG is a fickle disease and will turn on you quickly. If it happens again, call your neuro or go in to urgent care. Please.

Annie