Single fiber EMG test for MG in New Jersey
 

My sister-in-law needs to have a Single fiber EMG test to rule out MG (possible ocular). All her tests have been negative or inconclusive so far. She lives in Northern New Jersey and was told she should go to Columbia Presbyterian Medical in NYC but it is out of network and she can't afford it.

We have been trying, unsuccessfully, to find a doctor/facility in New Jersey that does this test. Everyone she has been referred to in New Jersey does not have the equipment for this test....if they did at one time, they do not anymore. We have been using the online searches only to call, be given an appointment but then called back and told they stopped doing it.

Any suggestions are appreciated.

There are many major medical facilities in New York City, there must be one that is in-network and capable of doing the test. I'm in CT and just haven't gotten to doing the search, yet, as I have run out of options in CT. (Don't go to Yale New Haven even if it is a big name. Just don't. Trust me.) There has got to be a place in NYC or on Long Island that is good. Keep looking.

What about Philadelphia? She must be within reach of Philly, also, yes? Maybe there is a place there?

Hi, dasw. Would you mind saying what tests she has had? There are three antibody tests: AChR (acetylcholine receptor), MuSK, and LRP4. Has she seen a neuro-ophthalmologist? They can do specific tests to determine if she has fatigable muscles in the eye area. And they can clearly show if she has double vision, which is from eye muscles not focusing the eyes the same way.

There are areas in Pennsylvania that have MG experts. There are many MDA clinics across the country that have "free" visit days. This might take some calling around, but will be well worth it.

http://www.myasthenia.org/LinkClick....4%3d&tabid=306

Muscular Dystrophy Association

Hospital of the University of Pennsylvania | Muscular Dystrophy Association

Please have her get copies of all her tests. Sometimes doctors do not consider a low abnormal test to be abnormal! Seriously.

The important thing is to have a diagnosis, whatever is going on.

Has she taken photos of her eyes, such as first thing in the morning and then later in the day? Does she have double vision? Does that go away when she closes one eye (which is typical of MG double vision)?

MG rarely stays ocular. If she starts to have any other symptoms, such as head or neck weakness, swallowing issues, etc., she needs to see a neurologist (expert or not) right away.

Sometimes we have to see more than one neurologist or different specialist (i.e., neuro-ophthalmologist) to be diagnosed. Please call around to find someone in the area she can see. Calling the insurance company might help as well. If there is no one in New Jersey who can do a SFEMG to diagnose her, she has the right to go elsewhere. They might have a recommendation or be able to say which out-of-state provider would be covered.

I hope she can find someone to help her. If there's more she needs to know, please let her know that she is welcome here! Thank you for helping her!

Annie

Thanks Annie,
I am not able to lists her tests but do know she has been to many ophthalmologists, neurologists and neuro-ophthalmologists. She has ptosis and her right eye lid is closed almost all the way (patches it to see) and her left eye lid is held open with tape. Yes she has double vision when using both eyes. She has had many muscle fatigue tests and blood tests. So far she has not had any other MG symptoms but is also dealing with diabetes (type one adult onset) and balance problems due to an inner ear problem which she is not able to get any relief from.

As for the insurance....she can get the SFEMG in NYC as an out of network service which has a $5000 deductible. :eek:

One of the problems she has is transportation. She obviously can't drive and can't take public transportation. I am a retired RN and try to help her every chance I get (live in upstate NY). Her daughter also visits but can't be there week days. She has some friends but they are not willing to go long distances or into cities like NYC.

She's dealing with an awful lot. I will mention to her about checking out this forum but she's not on the computer much due to her vision.

I just spoke to her and the MG diagnosis is on the back burner for now. Her local neurologist's office continues to try and find a doctor/facility that can perform the SFEMG. She's so tired of all these doctor visits and tests. The dizziness/balance, which no medication seems to help, is driving her crazy. She has had brain scans, heart check ups and ear tests. Her last balance test pointed to an inner ear problem so she is now seeing an inner ear neurologist.

I'll keep up with the forum and read as much as I can.

There's always the ice pack test or a Tensilon test (both done by doctors), since she has obvious signs of ocular MG.

Since one eyelid is dominantly droopy, she could pull up on that one for a few seconds. If she has MG, what should happen is that the dominant one should go up, while the other one goes down. Then they play seesaw for a bit. That is called "enhanced ptosis."

She could also try placing a cool washcloth (not cold) over her eyelids to see what happens.

Is she on any drugs right now? Some drugs make MG worse or can even cause drug-induced MG.

Was her "brain scan" an MRI? Has she had other basic tests such as vitamin B12 and D, TSH, and a chem panel? Patients can have more than one thing at a time. The ear issues could be unrelated. They could also be an allergy, TMJ, having background noises such as fans, etc. Hyperacusis is something that people with MG experience. There are muscles in the ear. MG effects any of the 640 skeletal muscles.

Check with the MDA clinics. The cost of a SFEMG might not be that high.

Have they thought about doing a Mestinon trial to see how she does? She could try Mestinon syrup, where she could titrate the dose more slowly.

I hope she can find help soon.

Annie