Hi Colin - DO you have health insurance? If so, because of your youth, and the fact that you are in your "family rearing" years, any neurologist can order a myotonia panel, and the reasons would be fairly obvious - tremors, involuntary muscle stiffness and spasms, genetic counseling, etc... and the most likely lab to do it would be Athena, and they send a nurse right to your home to draw the blood. But have you had an EMG test yet? It sounds as if you are sort of getting the run-around. (that always gets my patient- advocate blood boiling!) lois

Type of Myotonia: MC- Becker's type

Country: USA

I have recently been put on Mexiletine and I too have noticed these tremors in my fingers even when completely relaxed in bed. If I hold my hand out I can't keep my fingers from shaking and occasionally twitching.

As far as the weakness in eyelids I too have had this happen and it seems to affect me exclusively when I am trying to focus on something especially while driving where it becomes extremely difficult to keep my eyes open despite not being tired at all. Many times I have had to pull over and wait for these episodes to pass. Not sure if that's the same experience but I have always assumed it was related to my MC.

Type of Myotonia: Unknown

Country: USA

Colin:

You can actually have any doctor order the test but it probably would be best to go through a neurologist familiar with the disorders in your case.

You can contact the MDA and they can put you in touch with a neurologist who has heard of MC.

Type of Myotonia: Becker

Jena,

Thanks for the sugestion of going to the MDA. (not sure why the local neurologist never mentioned it) A rep from the local MDA office was able to get me an appointment. MDA is paying for the visit and the rep is comming with me to the appt. to act as an advocate. Like you said, they were able to find a specialist close by. I'm going to the appt on Thur. and will ask if a myotonia panel can be ordered for DNA testing.

I'm trying to make the most of the visit and want have toughts and ?s organized. "What type of myotonia do I have?"; "Why am I starting to get tremmors in my hands?"; "Are there any new treatments or new medications available?"

Does anyone else have other suggestions on what I should ask the specialist? Also, If you have a general or tech. question regarding myotonia you want answered, I wouldn't mind bring it up in my visit.

Type of Myotonia: Unknown

Country: FL, USA