Getting Undiagnosed
 

I've been seeing a Neurologist lately and the eeg and nerve conduction study were normal. I was told I didn't have anything wrong. I'm in tears right now because this is so frustrating. It's been more than ten years of this and I'm so tired of tests not getting to the bottom of things. The test for the nerve conduction was done on my right hand only and the eeg was done while i was bending over a chair on the back of my neck and in my arms. It took about five minutes in all. the nerve conduction study - the guy had the wires in wrong at first and blasted me with pain, and after he switched the wires around he had to turn the thing way down. They are going to try and get me into the Mayo clinic, but there is only a slim chance. I give up... They are probably going to take me off of pyridostigmine too.

ugh, how frustrating!!! Who diagnosed you in the past - can you go back to them? The mestinon helps you? Why can't they just leave you on it if it helps - regardless of your diagnosis ? My neuro is so close minded it's frustrating - a negative test means you don't have it period - they don't think outside of the box - they dont' even consider seronegative diagnosis.. so incredibly frustrating.. keep us updated!

I was diagnosed by a Rheumatologist, because of a positive anti ach antibody test. It was positive for modulating antibodies. The Rheumatologist gave me the pyridostigmine to see how I reacted, and my reaction was good, but this Neurologist I'm seeing says that he can't count on my reaction, he needs actual data. He asked me how the Rheumy knew I was doing better, and I said "because I told him." That isn't enough for this doctor. He was condescending, making me feel as though I'm lying about what's going on. I hope I get approved to go to the Mayo clinic. With this Neurologist, I felt like I was on trial. He kept asking me questions that I didn't know the answer to. He was very intimidating.

There is evidence in my family of Channelopathies and I think this needs to be looked into. Whether or not it's MG, I know there is something going on. The thing I don't understand is that the last time I saw him he commented on how weak my muscles were. So, why am I made to feel like I'm on trial? I really don't think I'm imagining all this. If I am, then they need to refer me to a psychologist.

I'm confused. You have a positive blood test and he still doesn't think you have MG? that doesn't sound right. Unless I am reading this incorrectly, I would like for you to know that I was diagnosed with MG and the single fiber EMG was tried on my hand and on my forehead and it didn't come back positive. They said it was normal. I mainly have/had bulbar symptoms. I have confirmed mild eye lid weakness now and I do get fatigued easily that tends to get better with rest. I have the positive ACHR test and had it reran at multiple/different labs and it has been confirmed each time. I'm really sorry you're going through this :( . Please hang in there and keep your chin up.

...doesn't sound like an "...eternal optimist..." to me...:)

For what it's worth, Quandry, you have friends here, including lurkers, who have had or are experiencing similar frustrations...

I believe it was Admiral Ferregut (sp) who said, "Damn the torpedoes, full speed ahead!" :)

Are you sure you want to continue seeing this neuro? Is he a neuromuscular specialist or does he have experience with MG?

If your antibodies are positive and you present with clinical MG symptoms, why is he even questioning it?

My SFemg took almost an hour and was performed by an neuromuscular specialist at a large teaching hospital and they performed it on the eye muscles because they are often the first affected.

If the test only took 5 minutes how could they have repeated the stimulation sufficient to see degredation of muscular contraction? I think you need a new more experience new neuro with more experience with MG.

I would not settle for this level of medical treatment.
kathie

New neuro time!!!!
Mike

agreed.. new neuro time indeed... it's awful enough to feel awful, but to be made to feel that way and have your time wasted just makes it all so much worse.. it sure is hard to find a good neuro!

I also think you need a new neurologist.

"They are going to try and get me into the Mayo clinic, but there is only a slim chance. I give up... "

I think if you contacted Mayo and told them of your current treatment, you should have a good chance of getting in. I think they would be so appauled they would get you for sympathetic reasons. Let the doctors do the leg-work with getting all your testing over and writting all the letters but follow up with Mayo's medical concierge with your own letter of your medical history and your families as well as your current condition. That is what John Hopkins said for me to do. Persistance pays off. Keep following up by phone every month explaining your situation and medical condition. I did this with Jefferson and got my appointment bumped up from 8 months to 2 months.

kathie