I have hyperparathyroid orginally due to vit D defieciency but now it wont normalize even when my levels are in the normal range. I know all the differences I feel when this hormone is elevated so it makes sense to me that this cold affect accurate tests like blood for MG and maybe even EMGs. Does anyone know. This question came to me as I was reading pingpongmans AChR question and responses this morn.

Also what is everyones experience with doctors knowledge on the correct way to get good SFemg and emg tests done? When I went to may I was surprised that it was very very important to them that I be warm. I asked why the room was warm and why I was being asked about how warm I was. They said it is important to test accurancy. I have found this stated in online emg tech manuals for emgs and medical research material. I asked my neuro about this as I have never been tested in summer when I am worse with the warming thing taken into consideration. When Mayo did mine they were negative per se but showed myotonic discharges which I also found can indicate a cold muscle. It was December in the midwest when this test was done and I had travel north and it was colder so the morning I went I was noticelably stronger and was concerned the test would be blown.

Annie59

Annie, Do you have a neurologist you feel you can trust? I think you need to bring all of your concerns up to them. Do you have copies of your records, like the SFEMG?

If Mayo kept your muscles warm, then the chances of the test being accurate are higher.

Was it myogenic jitter instead of myotonic? What did their notes say?

http://books.google.com/books?id=ycx...harges&f=false

This is an odd little genetic disease but it cross referenced with articles on SFEMG and myotonic.

http://www.cigna.com/healthinfo/nord1058.html

I don't know what the answers are for you, Annie. I think you have to do some more doctoring and let them figure it out.

One more thing. Do you have a good endocrinologist? Have they actually imaged your parathyroids, looking for any small tumors? Rechecking that situation is a very good idea.

Annie

Thanks pingpongman, I guess I thought of this in part cause of your posting and also cause my pulmonoligist said Thursday there is every reason to do another antibody test on me! Yippeeeeeeeeeeeeeeeeee!!!!!!!!! I had just told him of yet another frustrating conversation with my young neuro who HAD agreed on the phone with my duaghter to do the antibody tests again since it has been since July 08 for a full test set. This was based on a call around me being worse and having MG confirmed in my eyes. When we went to do it she said no.

Annie59

Annie, it seems I went into the place when I am sick and didnt see your answer here. I hope it is all right if I respond now. I did a search on emg post looking for another and found this.

It was indeed myotonic which I wondered was part of the reason they tested me for myotonic dystrophy. But when I went thru the notes I saw that the pulmonologist was the one that specualted it was this because my breathing was worse at that point than made sense for the standard MG (in relation to the severity of other symptoms).

What is myogenic versus myotonic. I assume you know this area more than I do. I will look back in the notes to refresh but it was myotonic.

About the genetic disorder link I took a quick peek. What is maybe unfortunate is I had a rep at the company that makes the only treatment for Myotonic Dys (Genzyme) come to my support and make an appoitment for me at the univeristy with the new genetic specialist. I had just seen the 2nd neuro for what I thoguht was gonna be treatment for POTS/autonomic dysfun and we discovered he had totally did the whole in your head/your fault thing dissmissing me. My daughter was furious and I knew if we saw another doctor that did that it would be disatrous. I cancled the appointment. I was stunned by that neuro having his mind made made up as he did before he saw me. He suggested my dizziness was because I was not drinking enough water or even hyperventilating both of which are not true. Esp the water thing was a big slap as I have Sjogrens so I HAVE to pay close attention to hydration for my eyelids to even move well across my eyes much less swallow first thing in the morn.

Annie59

Annie, I'm so glad they're going to retest your antibodies! When I had mine done the second time, the neuro said, "I just had a patient who tested negative and then positive." When I got mine tested the third time, he said, "I just had a patient who tested negative twice, and then positive." So obviously it's not unheard of.

Abby

Abby, Sorry no I am not getting my antibodies redone. That is another test that my pulmonologist asked my neuro to do and she refused. She HAD promised my daughter she would after my eyes tested positive in May and I was getting worse so my daughter called her and an appoitment was set up to see her and do the blood test. Neuro backed out saying "didnt you have 2 (already)?" She was asking me! I couldnt remember exactly. I had almost 2 as Mayo didnt do the group again.

Sorry if I wrote something that suggested I was. I am thinking very hard about going to the local neuro and seeing if he will do it. I am not sure how much he will do as he is not a muscle neuro. To some people he is a miracle worker. But he is under review by the state medical society.

My daughter went to him for her seizures and had to switch after his mother who is his office manager made it impossible for her to get her medication and such. It is a weird set up but locally the only place I havent been at all. My only other option for maybe getting another test and at least mestinon if the neuro at the univeristy stops giving it to me after this recent neuro disaster last month.

I hope something works out. For now given how bad this last appointment was, all the misunderstandings I will bre deeply grateful to just come out of it will my pulmo staying on my case and my side and able to get presciption for mestinon.

I have the opportunity to see an impartial doc around my eyes but it is an hour and a half away. My daughter doesnt want to do it. Or I should say she is burned out and wishes her sister would pitch in which isnt happening. It is hurtful that the girls dont understand as well as you all do that this is such a hard disease to diagnose.

For now I need to focus on my eyes and my breathing /throat. If they have to be dealt with without a diagnosis so be it. I guess it will be back to gather evidence again. I am glad that I have the winter improvement to strength in legs and arms to at least give me some pieces relief.

Annie59