Thank you so much. I will be sure to mention that to my doctor. I was wondering though, how long do the blood results take to test fir MG? I gave them blood on Monday.

My blood work (4 times) was sent to Mayo and took about 4 weeks to come back.
Mike

Yes, it took at least three weeks for mine, because it had to be sent away.

Abby

Floppychops, Do you have another name you'd like to go by?

I can only give you my impression of what you've said so far. Like Smokey, I agree that MG can look like Bells Palsy. One side of your face can droop. Sometimes people can also think they've had a stroke. What they usually give for Bells are steroids. Did they do that for you? Studies have shown that a combination of steroids and B12 (sublingual preferably) improve Bells faster.

Have you had your vitamin B12 checked? Anytime someone has a peripheral neuropathy, especially with chronic fatigue, they should have that checked out. Since you have a peripheral neuropathy, they should probably check homocysteine and methylmalonic acid too, which can go up if you aren't getting enough B12 to your tissues. If you find out you have one, please come back and I'll bore you with all of the info about how to treat it, etc.

Gadolinium, the contrast they use for MRI's, is not benign. At least research it before you decide if you must have it. You could always have it again later. Are they looking for MS too? For example, are they looking for lesions in the brain? You can get that with a B12 deficiency too. And often you can see them without contrast.

Get your hospital records from that period of time! What if you had an MG exacerbation or crisis but they thought it was pneumonia because of oxygen saturation. Were you showing signs of a cold or bronchitis? Did they give you an antibiotic? Oxygen saturation can go low in MG, especially during pneumonia (if that's what was going on).

Have you seen a cardiologist? High blood pressure can be from lots of things, including untreated MG. Like my cardiologist said, the brain and heart don't care what the reason for a high BP is, they'll have a stroke or heart attack anyway. Please get someone to figure out WHY before they throw drugs at you though - unless it's really high! How high is it? Do you monitor it at home with a BP cuff? I like the wrist ones because they hurt less.

Ditto on what Abby said about hypokalemia. But, again, you have to know WHY you have it!

Teresa is right . . . CD, especially if you are having any gastrointestinal symptoms or deficiencies, should be tested for.

My Acetylcholine blood tests only took a week (Mayo clinic too). Maybe it's because I live in the same state they were run.

Have you had your vitamin D tested? A deficiency is very common and can cause pain.

Raynauds should be evaluated by a rheumatologist. Yes, internists are helpful but sometimes you really do need specialists. Please get a 2nd opinion on that one. You may not have anything additional like lupus but, if it were me, I'd want to know for sure.

Good luck with the tests. I hope you hear soon what's going on.

Hi, Dean from Texas. Welcome! I'm sorry it took so long for you to be diagnosed but it's great you have Mestinon to use now.

Annie

Hi Annie! My real name is salli. Floppychops is actually my boxer-dog whom I absolutely adore!
Hope this isn't too long but I figure that this will give you more insight.
Basically healthy growing up except for being tired ALOT and having to take naps in the afternoon. Had a couple of seizures as a kid just out of the blue for no apparent reason. Pass out, eyes roll back in head and jerk a little bit. Was tested for epilepsy and found nothing.
Fast forward to being 23 and pregnant about 4 months and have another seizure sitting in a restaurant. I feel nauseated before I pass out and all the sounds and voices around me just kind of start sounding like they are fading away. Pass out, eyes roll back, vomit and pee on myself (sorry if this too much TMI) all while being totally passed out. Come to, and I am transported by ambulance to hospital where they tell me I am fine and just contribute it to being pregnant. Then at home alone in about my 8th month of pregnancy, this happens again. Come to, clean myself up.
Fast forward to almost 7 years ago (I'm 44 now), I catch a cold and don't think too much of it. All of a sudden about 4 days into it, I sleep like 2 whole days away and wake up having trouble breathing. I knew I was in trouble so we called the paramedics and went to hospital.
They never actually said "you have pneumonia" , just that they wanted to take xrays of my lungs and that they are suspecting pneumonia. I end up staying for week and put on antibiotics. Discharged, go home for about 4 days and end up back for another week long stay at the hospital because I guess the antibiotics didn't work. This time they give me leviquin and breathing treatments the whole time and eventually released.
2 months later bells palsy sets in on right side of face and doctor asks a few questions, tells me it's bells palsy and prescribes me steroids. They do absolutely nothing for my face, and 7 years later, I still look like popeye when I laugh! Lol
Then it all starts! THe numbness and tingling in my legs, the aches and pains in my body. Being sooo tired I have to lay down because I can't move, it's exhausting to even talk! And I feel like I'm dying.
They do bloodwork, MRI and everything shows clean. At this point the doctors began to look at me like I'm nuts. Finally a doctor sees my purple/blue toes and diagnoses me with raynauds. Then the rheumitologist diagnoses me with fibromyalgia. Then the high blood pressure and hypothyroidism comes.
Fast forward to now, mothers day weekend I could feel myself getting weaker and more tired and chalked it up to my fibro. But when I started almost losing function in my hands from the weakness, I got scared and made a doctors appointment. He then tells me I have PN, does bloodwork and tells me low potassium. Prescribes potassium pills 1 a day. Does more blood, potassium still too low. Has me take 2 pills a day. More blood, still low. Now we are up to 4 potassium pills a day, blood pressure (which is a water pill also) and my thyroid pill. I feel better than I did, but I tell you, if I thought I was sick 7 years ago,,,, that was nothing compared to now!
I'm off balance, headaches, weakness that comes and goes, muscle cramps, difficulty swallowing feeling like there's something stuck in my throat, pain in shoulders, neck, lower back. Total heat intolerant, eyes hurt when I move them and also sometimes eyes feel like they are filmy. Numbness and tingling in legs and feet hurt. I fell last week going up some stairs. Sure enough it was my left foot, which I've noticed a few times I thought I had lifted it all the way into the car, but hadn't. The other night was rough. I was laying in bed and tired and in pain and my legs felt like they were either vibrating or buzzing, couldn't tell which. Then last night, got up to go to bathroom and didn't quite make it there before I peed some. (sorry if too much info). Oh and I almost forgot, my jaw sometimes is too tired to eat anything difficult.
Well I'm sorry if I bored anyone but I can't talk to my family about it, cause then they get stressed which in turns stresses me out. So I have you guys and my doctor. And at this point he is testing me for MG and MS.
Thanks for listening and reading! I appreciate you all!

Salli
First off - I absolutely love your boxer's name!! We had one when I was a kid and that dog was practically my sibling!! Her nickname was JJ short for 'jelly jowls'.

Sounds like you have a number of things going on - - some seem like MG, but others don't. And the frustrating thing is all the testing and 'doctoring' takes time, can get very stressful and sometimes even depressing.

Please come here often to find support and ideas. Great group of folks here - and everyone can connect on a level that even the most supportive family members can not. I hope you get some answers soon.

Hi,

I may be totally wrong here, since I only have your story,

But: you seem to have an illness that affects your central nervous system, (epilepsy), peripheral nervous system, possibly kidneys (high blood pressure and electrolyte abnormalities), maybe lungs, as well as you vascular system (raynaud"s).

It also seems to be exacerbated during pregnancy, and has an intermittent course.

It all sounds to me like a systemic autoimmune disease. Possibly SLE.

Did anyone consider this possibility?

alice

Floppychops, it sounds like you have Lyme Disease. Bells Palsy is a telltale sign, so are most of the other symptoms you list. The tests for it can be inaccurate.

Check out www.lymefriends.org and www.lymenet.org , as well as www.ilads.org . I would seriously look into that. I've had Chronic Lyme for 7 years, which actually CAUSED my MG. Long term bacterial infections can cause you to develop autoimmune disease.

Hello everyone! Well I had my MRI yesterday and waiting on results. Sue, I LOVE the name Jelly Jowls! Too cute!

Alice, I don't know if I have been tested for lupus or not. Would I of needed to ask specifically to be tested for it or would it been routine somewhere along the line so far? I have often wondered about lupus but figured since I didn't have the rash,,,,

Tracy, I mentioned Lyme to my doctor last week and he dismissed that notion saying that it is highly unlikely here in Missouri. He then asked me if I have been back east or up north, which I haven't.
Although right before I got sick 7 years ago, I did get bit by a tick with a white spot on it. ICK! Ever since I have literally been tick paranoid!

Thank you all for being here for me! I REALLY DO appreciate your time.

Hello everyone. Well I got my results for my bloodwork this morning. It came back negative. I'm kinda weeping today. Had a rough night last night. Lots of pain and didn't sleep well, so I have that drug-out worn-down sleep-deprived feeling today. Still waiting on the results of my MRI for MS. More and more of my symptoms are pointing towards that. Thanks for letting me whine to u guys!