Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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ButtonCollector 08/02/2015

Hello everyone. I have not been on in a long time. I am still undiagnosed. My neuro started me on generic Mestinon last year and I have seen improvement since being on it. He is sending me out of state to UT Southwestern soon to hopefully help in the diagnosis. For those who have been there, what should I expect from the first appointment? Do they do any tests at first appointment or just consult? Wondering if I should continue taking the Mestinon up to the appointment or is it better to go off of it some time prior to the appointment. Will it make a difference? Just getting really nervous here as I have had some bad experiences with doctors in the past. Any suggestions?

txkiki53 08/02/2015

Hey, I go to UTSW. I see Dr. Nations. What doctor do you have an appt with?

Annette

ButtonCollector 08/03/2015

Dr Elliott

EssentialOilMom 08/03/2015

HI,
I saw Dr. Nations and Dr. Elliott the first time I went to UT. Dr. Nations was my reg. Dr. until I moved.
Stop taking mestinon - that is what my reg. neuro told me bc they did do eMG testing on my first visit - that way it was not skewed by the medication or my physical exam was not either.
I drove there from about 2.5 hours away so all the testing they could fit in, they did.
I was there for most of the day - Did the reg. office visit and physical exam which was a couple of hours then left for lunch and came back for all of the testing. That was a few hours long as well.
I love all of the dr's and staff at UT - from the valet parking staff, to those who draw your blood!
Everyone we encountered was wonderful.
I wish you the very best!

ButtonCollector 08/03/2015

Thank you! Should I stop the Mestinon today? I am driving four hours to see him. Do they usually take that into account for people who travel and try to gets lots of testing done or should I call and inquire?

txkiki53 08/03/2015

When are you going? When I had the sfemg I was told 24 hours but I wanted to be sure and stopped 2-3 days before

When is your appt ?

ButtonCollector 08/04/2015

My appointment is a week from today, next Tuesday. I did call and ask if they would be doing any testing since we are coming so far and she said it is possible, but she said she could not say. She said it was up to the doctor and what he decides when he sees me.

txkiki53 08/05/2015

Did u talk with his nurse? If not maybe call to speak with her/him . I hope you get answers. Valet park, it's easier and only $5.00. Are u coming for the day or staying a few days?

ButtonCollector 08/05/2015

We are going down on Sunday afternoon so we will have a couple of days. I talked to someone in his office, but I don't think it was his nurse.

txkiki53 08/05/2015

Call and ask his nurse to call u she would know better. I am there Saturday for plasmapheresis.

txkiki53 08/14/2015

Checking to see how your appt went?

ButtonCollector 08/21/2015

Thanks for asking. Sorry I have not been on lately. Dr. Elliott was very nice to me. He did not seem to think it was Myasthenia since I have balance problems also and he said that does not go with Myasthenia. He also said all my reflexes are hyperreflexive, which He seemed to be unsure what was causing that. He did order blood work and they were able to fit me in the next day for a nerve conduction study and Single Fiber test. The single fiber was done in the forearm and also the forehead. The forehead was rough. She had a hard time getting the amount of readings she needed at first. First she could only get two and said they were border line. She wanted ten. We decided to take a break for about an hour and try again. She was then able to complete the test. I am still waiting to hear back. His nurse said it may be the end of the month as he wants to wait until all the results are in before discussing with me, so I am still waiting. I know some of the blood work was send out so I guess that may be the delay. She would not tell me the results of the single fiber test.

txkiki53 08/24/2015

So sorry for the wait that is hard to hurry up and wait. I know I also have balance issues and others. I also have been told my reflex are hyper reflexive . I hope you get answers soon.
Annette

ButtonCollector 08/24/2015

That is interesting that you have balance issues and hyper reflexes also. I have an appt. with my local neuro on Friday and I am hoping the results may be in by then so we can discuss it at my appt.

limpnoodle 08/25/2015

One of the main problems in getting a diagnosis is getting past preconceived notions about what is and isn't typical of a particular illness.
If my doctors went by all this, I would still be looking for a diagnosis.

Mg and Lems do not behave in the same way in each individual, and by tge same token, respond to different treatments on an individual basis as well.
I have Lems and possibly mg, and I have huge balance issues even when relatively strong. I have to always be on guard because falling is a real fear for me.
When first diagnosed with Lems I had normal and even strong reflexes. Some have diminished since then. I also had normal emgs, but had VGCC antibodies. Some doctors will not diagnose on the basis of antibodies alone, but stubbornly require a patient to display 'all' the diagnostic criteria.
Hope you get a straightforward diagnosis and get effective treatment.

txkiki53 08/26/2015

I hope you get answers on Friday..don't give up
Annette

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