Tips for visit with new specialist
 

Hello again,

I have an appointment next week with a new neuromuscular specialist. This is probably going to be my last shot at trying to get my weakness of 12 years diagnosed/treated, so I'm doing my best to get a thorough evaluation. Has anyone by chance been to see Dr. Kumaraswamy Sivakumar?

MG is just one of the diagnoses I think is possible. (periodic paralysis-maybe with paramyotonia congenita, episodic ataxia, mito disease, dysautonomia, etc.) So far, I have had NO abnormal test results of any kind. Before accepting yet another "gee, I don't know," to rule out MG I plan to ask about MUSK ab testing, Tensilon test and/or Mestinon trial, and possibly an EMG of the eyelids.

Anything else I should be asking about? Any tips you can offer?

Thanks,
Geode

Geode, Do you remember when you said you were "paralyzed" from a glucose tolerance test? Maybe you should load up on carbs before an EMG. ;)

Are you going to give the doctor any documentation? Photos?

They might consider a muscle biopsy.

Have you seen an endocrinologist to do a 24-hour potassium (urine)? Has someone checked your electrolytes or entire chemistry when you are weaker, like after eating?

Don't give up simply because modern medicine is compartmentalized. Sometimes you need a few doctors coming at this from different angles to get an answer. Heck, there may be more than one "answer."

I've been sick and busy, so sorry that I didn't respond sooner. I really do hope they can figure out what's going on. I think you have to let the doctor take the lead. I'm not sure I'd ask for drugs like Mestinon until you have a diagnosis. Mestinon could actually make things worse if you have too much acetylcholine for some reason.

Do you have ALL of your test results? Are you sure you don't have any abnormal ones? ;) Good luck!

Annie

Thanks, Annie. I'm sorry you've been ill, but please never worry about the timing of a response. You were actually quite timely and even if you weren't, that's just the nature of things when communicating on forums for chronic illness.

These are all great ideas you suggest. Will be sure to do video documentation and provoking symptoms for the EMG. I've had CBC and electrolytes done during attacks. I even bought a Cardy potassium meter to check my own potassium levels at home, and can't document shifts in potassium in relationship to my attacks. You are the second person to recommend the 24-hour urine K+ test, so I'll definitely ask about that.

The triggers of my weakness, and the wide fluctuations from normal strength to limp, just scream "periodic paralysis" but the following would all be atypical for that, and more suggestive of MG:

1. Age of onset - 30 years
2. Weakness of cranial muscles
3. No full-body paralysis
4. No documented shifts in K+
5. Ice helps my eyelids
6. Stimulants help weakness
7. Period of "remission" after a prednisone burst
8. Fatiguable weakness, rather than weakness during rest period AFTER exercise

If I do get an answer I'll be sure to let you know.

Thanks again,
Tatia