I am getting my records together to send to John Hopkins. One of the tests they asked to forward was a muscle biopsy. I have not had one. How many here have had a muscle biopsy??

In fact, I have not had many test to differentiate from MG. I only had tests to confirm MG. They did do an MRI of the Brain and evoc potential to see if it was MS. They did do and MRI of the spine an emg to rule out herniated disc interferring with the nerve impulses to my LEG. They did do a lot of antibody blood work to rule out other autoimmune diseases - anti- ANA, RA, YO, ANCA, SSA, SSB, SM etc.

Has every one else had a lot of differential test to rule out other disease than MG? If so, what kind.

thanks
kathie

Kathie, It's reasonable to do the basic differential testing, but doing too much testing is, well, stupid. MG is a clinical diagnosis, backed up with tests. I can understand the doctors doing more testing if you're having multiple symptoms, but have they done the thinking first, before plunging into haphazard testing?

The differential for MG is a small list. A brain MRI, some blood tests, a good clinical exam, etc., is usually enough. Do they think you might have an additional disease or that you might not have MG?

I had a regular muscle biopsy. They can only numb the skin, not the muscle (which they cut into), so it was quite painful. And before they get to the muscle, they need to carve through any fat above it. They look for muscle fiber size, inflammation, NMJ, etc. If they want to look at the mitochondria, there is more specialized staining done.

There's a more specialized biopsy that's done for CMS, but it's done on, for example, the intercostal muscles and it comes with far greater risks. Most doctors won't do it.

You can have MG and another disease, as you know. I hope they won't pull the MG diagnosis while they run you through the diagnostic mill, making you doubt your sanity, while losing more energy and money!

What are your thoughts on all of this?

Annie

My biggest fear in going to John Hopkins is maybe losing the MG diagnosis and then not knowing what I do have. I have no doubt I have MG, I have all the classic symptoms and a positive SFEMG. I was so surprised she asked for a muscle biopsy, that I wondered if it was standard. And then I started wondering, if I was suppose to have other testing. I think all my specialist are comfortable with the MG diagnosis, but all of them think I have another Autoimmune disease too because of all the rapid bowel transit, bouts of anemia and the rashes that wax and wane with the MG,

My MG is getting worse, my breathing is very much affected. I am on 2000 of cellcept for almost 3 months and the MG continues to get worse. It looks like I am going to have to have IVIG routinely. I am still on the prednisone (10 every other day and 660 of mestinon a day. I think I will have to stop working shortly. I was hoping John Hopkins would have more aggressive treatment, but I am a little worried of the risk of losing the MG diagnosis.

By the way, I am so happy you are back
kathie

I have never had a muscle biopsy, but have been threatened with one. I have heard it is very painful. Maybe your blood tests will be positive if you have them repeated. All of mine were negative when I first had them done, but several months later , when I was in the middle of an exacerbation, I was positive for Lems and Sjogren's.

I had a muscle biopsy in my left shoulder and it didn't hurt at all. I could feel them tugging on it and sense when they were cutting it. It was sore for a couple of days. They gave me a prescription for pain pills but I didn't need any. I was undiagnosed at the time & they were trying to find out what I had. Went to a Movement Disorder Specialist & was diagnosed with Parkinson's Disease. Maybe the pain depends on where they take the biopsy and how they do it. EMG's I've had hurt more than the Muscle Biopsy.

Please don't feel that you need a muscle biopsy to go to Johns Hopkins. I have my first appointment in July 2014. They just want to know what you have done to plan ahead for your visit.They usually order certain labs/test ahead of time during your visit. My initial diagnosis during the time of appointment request was Myopathy and small fiber Neuropathy. Now that I have MG, gait abnormality and right sided weakness and abnormal MRI, I'm sure they will add or change my labs when they get my updated records.
They tend to do EMG irregardless of when you last had one . My evaluation has caused me thousands of dollars out of pocket in spite of excellent health insurance. Name the test and I've probably had it done. Its been very expensive to say the least. Best wishes on your evaluation. Don't worry about the muscle biopsy. My Neuro is trying decide if I need one with the MG diagnosis and abnormal MRI. Just get your docs to send whatever you have and they will decide if you need it before or after your visit.