I will say this. My blood panels, EMG, and Ct scan were ALL negative in the beginning. You need to keep working your doctors hard. I am sure there are many others on here with same conditions.
Mike

If they suspect MS as a possibility, you will be scheduled for a MRI of brain (and maybe spine). It (and the CT to rule out thymoma) were the first tests done on me after nerve conduction study and the blood work.

When they ordered the MRI - the order said to screen for vasculitis - - but that was likely window dressing...since the first thing they said at my follow up is that MS was ruled out.

MOST people with MG DO NOT have an enlargement/tumor in their chest - the CT scan is done to ascertain whether or not that is an issue. A thymoma is just one of MANY symptoms that people with MG CAN have, but not having one DOES NOT mean that a person doesn't have MG.

The CT scan is merely another data point.

Teresa is so right. When there's no thymoma, no antibodies, no SFEMG failure....well then the only way to get to MG dx is by eliminating other possibles (like MS and vasculitis in my case).

Ultimately, because they found no other explanation and because my clinical symptoms matched with MG, I got my MG dx and the Mestinon I depend on daily. And no one without MG could tolerate the amount of Mestinon I take daily according to my neuro.

Thanks everyone! I go to the University of Texas research center on Tuesday. All of your insight has been great!! I will let you all know what I find out.

I sure hope the appt. on tuesay goes OK. ginnie

Ok, I went to the new neurologist. She was very thorough, and nice and really took a detailed history as well as family history. Nobody else requested such information and she seemed very intrigued about a lot of it. Due to my father having 3 different cancers she ran a test for Paraneoplastic Syndrome. Which is where you have cancer somewhere in your body and it creates antibodies to fight it but somewhere they get lost and attack the wrong things. It can lead to myasthenia gravis symptoms as well as others. I have to wait 6-8 weeks to get that one back. That said she also felt that the rash on my face looked like a lupus rash, and believes I have Raynauds and also feels I have celiac's disease. So...she ran 18 blood tests! WOW!! I got some of them back and wasn't surprised by the negative results as I just figured. Rheumatoid Arthritis is negative as well as Thyroid issues. I also got back negative results on some vitamin deficiencies. So, now I am waiting on the big ones. This new DR spent more than an hour with me. She had me walk for her, as well as do some balance tests etc... Very anxious to get results. Thanks again everyone for your experience sharing and friendship!!

Angela, Well, that's great news. I'm glad you found a thorough doctor who sees the entire health picture. What a find!

You never mentioned the rash on your face! Do you ever get one on your chest/neck or anywhere else? You know that a dermatologist would be a great augment to your care because they can do a biopsy to aid in figuring it all out. They can also pick up on little clues on the skin that other doctors can't.

Did she test for Parietal Cell Antibodies or Intrinsic Factor Antibodies? Have you ever heard of Autoimmune Polyglandular Syndrome II?

http://www.aafp.org/afp/2007/0301/p667.html

Did she check your thyroid antibodies? If you have autoimmune destruction of the thyroid gland, it can take awhile for the labs to show positive. Just something to keep in mind.

Do you ever feel "goofy" or get a rash after being in a store with UV lights or driving in your car in the sun? Do you ever feel like you have a fever but you don't? Do you have any symmetrical aches or pains? If you do have lupus, you should know that even a computer gives off UV radiation and can cause a lupus rash. All fluorescent bulbs too. Since you might have a cancer risk in your family, you should know that electromagnetic fields - like the sun - can induce cancer, especially in cancer prone people. That includes all electronics. I won't go on and on about this but did you know that clock radios emit large amounts of EMF's? Don't have one near you while you sleep! Seriously, this is a field of study that is often overlooked.

Sorry, I get carried away. You don't even have results yet!

Whatever is going on, I hope they can figure it all out and help you!

Dr. Oz has a LOT of great info on cancer fighting foods, etc. on his website. Anti-inflammatory ones too, which are often the same. We really are what we eat.

I hope you'll do something fun to get your mind off of the waiting. It's so hard to wait for news like this. Take it easy.

Annie

I was glad to hear that your doctor spent the time to really evaluate you. That is the kind of doctor you want in your corner. You will be in my thoughts and prayers. I know waiting for all the rest of the results is difficult, but this was a good thing to do. ginnie

The thyroid tests came back negative as well as the rheumatoid arthritis test. So far the only test that has come back abnormal was the high sensitivity crp. That was supposed to be <.02 mg/dL. Mine was .76 mg/dl or converted it's 7.6 mg/L. So I will wait for the other 9 tests to come back one of which is the Paraneoplastic Syndrome test. Thanks for all the feedback, I really appreciate it!! I will let you know if I find out anything.