Finally being tested for MG
 

Hello all. I am new here and have been reading everyones posts for quite some time. My doctor took blood today to test and I have a MRI with and without contrast scheduled for the 18th of July. I am nervous about my bloodwork coming back negative and then being back at square one again. Any advice for me?

Is your doctor a neuro and does he have experience with MG? If your blood work and MRI (or cat scan) come back negative (like mine), next steps will be in the hands of your doctor. Mine ordered SFEMG (actually performed the test)...whcih was also not terribly indicative.

I was lucky - my neuro was only looking for validation for the clinical dx she had made when we first met. Since then I have been on Mestinon and frequent follow ups with doc. I'm really fortuante...so far so good. I hope the same for you and your condition - whatever they end up calling it!!

Good luck and please let us know how things work out. And try to take it one step at a time - - we here all know how difficult that is to do - - but unfortunately, none of these test results come in quickly.

My doctor is in internal medicine. Abot 7 years ago I was diagnosed with fibromyalgia, bells palsy, raynauds, hypothyroidism, and high blood pressure after a stay in the hospital with pneumonia.
After is all said and done, I wonder if I even had pneumonia and wasn't in the middle of a MG crisis. Does that sound crazy? After I got out of the hospital, 2 months later I got the bells palsy, and then the other dx's just started coming! Lol

I think your blood work at the time of the pneumonia would have shown either viral or bacterial infection.

Did they give you antibiotics?

There are non-infectious pneumonias, but they are less common, and mostly from inhaled toxic substances.

Response
 

[QUOTE=floppychops;785584]Hello all. I am new here and have been reading everyones posts for quite some time. My doctor took blood today to test and I have a MRI with and without contrast scheduled for the 18th of July. I am nervous about my bloodwork coming back negative and then being back at square one again. Any advice for me?[/QUOT I was as nervous as you. Before diagnosis from bloodwork came backI was a nervous wreck. My Neurologist ran it twice to conform. MRI with contrast didn't make the diagnosis, bloodwork did. Now that I know what is wrong with me finally I can be treated and at the very least know what I am dealing with. I am 68 years old and now realize this started with me over 20 years ago. I am on a drug used on Soldiers and anyone else subjected to nerve gas. I could tell a difference in just one day. Good Luck my dear. I will check back on you. I too just found this forum.

Dean Datel
San Antonio, TX.

Thank you all for your replies. It's funny, they never actually told me I had pneumonia. They just told me that pneumonia was what they were thinking. You know how tight-lipped they can be when you are in the hospital! Lol
I dont know what antibiotics they gave me the first time, but they didn't do anything for me, so I was back in the hospital a week later for another 10 days. That time they gave me levaquin and eventually it did the trick.
Oh I forgot, last month I also got the dx of peripheral neuropathy, and hypokalemia (hope I spelled that correctly)
So here is my list and the order they came
Bells palsy
Raynauds disease
High blood pressure
Hypothyroidism
Fibromyalgia
Chronic fatigue
Hypokalemia
Peripheral neuropathy
I'm sooo glad I found you guys!

Hi, and welcome! I certainly do understand the anxiety. My antibodies blood test came back negative (three times), but I was diagnosed with MG on the basis of a single-fiber EMG (SFEMG). If your blood test comes back positive, you have a firm diagnosis of MG. But if it comes back negative, that doesn't mean you don't have MG. The next step should be to send you to a neurologist who specializes in neuromuscular diseases, because SFEMG testing is a specialized skill.

Hypokalemia means low levels of potassium in your blood. Did anyone suggest what might be causing it? You say you have high blood pressure--are you on a diuretic for it (like HCTZ)? Low potassium can make MG symptoms much worse. Is this being followed up? If it's just the HCTZ, you might be able to fix the problem by making sure you eat high-potassium foods every day. Bananas and orange juice are good, but potatoes are even better (the potassium is in the skin). Winter squashes are excellent. Beet greens are fantastic.

Keep asking questions!

Abby

Good Luck Floppychops, finding out what you have is not always a bad thing like Dean said it gives you a relief knowing how to combat it and definitely gives one mental relief that you do have something wrong and its not just in ones head!

The facial effects of MG can sure look like Bells Palsy if its bad enuff - I have had some episodes of left side of my face being both painful and non responsive, not so much that others notice but I sure could feel it. Have a hard time opening my left eyelid sometimes unless I open both at same time...

Unfortunately neuro diseases come in many forms and overlap a lot...
I am doing pretty good after 4 months of mestinon 60mg x3.... I am 54yrs young! :)
Randy

Thank you everyone! It is sooo comforting to come here and be able to read and talk to others who are or have experienced all of this. I don't feel so alone anymore! :)

While you're getting tested for Myasthenia, BE SURE and have your doctor add a Celiac Disease screen to your bloodwork. It's possible to have both at the same time - if you have a gluten intolerance/sensitivity, eliminating gluten from your diet can help ease some of your symptoms.

I'm not suggesting that you don't have MG - I got the CD diagnosis first, so I was already on a gluten-free diet for a couple of years before my MG diagnosis. I do think that the GF diet has made my symptoms less severe than they might have been otherwise; unfortunately, if a person has had undiagnosed CD for a long time there is some damage that can't be reversed.

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! :)

Hang in there! Just because blood work was neg...well, it still doesn't mean you don't have MG. Wait til results of MRI come in ... if negative (which is my hope for you) then the search continues.

Please let us know how things progress - we'll be thinkng of you.

My bloodwork was negative for MG as well, as were the subsequent "standard" tests.

My doctor was willing to do a trial of Mestinon. Most people without MG can't tolerate even a tiny bit of it (some folks with MG can't either), so you might want to ask about a short med trial, just to see....

Did you get tested for Celiac Disease? You may want to also do a trial gluten-free diet for a week/month, just to see if it might help a little bit.

I just found and joined this site today, but wanted to encourage you because I was not firmly diagnosed either for several months. Read Stellatum's note again. She/he is on the mark and parellel's my experience. You can be nerve fiber negative and single fiber negative and still have MG. If both of these are negative make sure they test you for the MuSK anti-body. They will not routinely order this test even if they suspect MG. Also, please please please, you must have a neurologist who has expertise in neuro-muscular diseases. Godspeed.

Thank you everyone. :) I'm still waiting for results of MRI and if those come back "clean", I guess I will then ask for the musk test? Are there days where you guys get out of bed weak and shaky? Feel a little better afterwhile and then bottom out again?