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.