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.

Rashes that wax and wane with MG? Would you mind talking about that further?

As a side note, due to the SFEMG's I've had on my forehead, I have these lovely little bumps from them. Any electrical signal can cause tissue damage.

My muscle biopsy was super painful, but that might be because I have nerve damage from my B12 deficiency (it went on too long to reverse all of the damage). Hard to say. But at least the guy doing the biopsy, and the nurse, were very kind and considerate. I still don't think "let's see what we'll find" was enough of a reason to have an ugly scar on my body!

Have you been thoroughly checked out for other mitigating factors, like thyroid or any other endocrine issue? Or other AI's? How are your electrolytes?

Annie

They checked out all the GI stuff. They did an upper and lower endoscopy with tissue samples for celiac. They were negative. They did a small bowel follow through, no Crohns but a 15 minute transit time, They did the blood test for celiac - negative. i had the GI symptoms way before they suspected MG or gave MG meds. They tried taking me off meds no relief of GI. The GI gets worse when the MG is worse. When I first started mestinon, the GI symptoms went away completely for 3 months. As my MG got worse, they started to return. When they put me on cellcept, again the GI went away for 2 month. Then a month ago my MG took another turn downward and the GI symptoms are coming back. They are accompanied by intermittent low grade fever and sweats. They did all the routine stool culture- all negative. The gastro thinks it is autoimmune related.

The rashes I have gotten from childhood on and off on exposure to sun. I get the rash on checks and nose and a web like rash on my legs and hands and arms. Now the rash does not go away. I have it all the time. It is less inflamed in the morning and gets worse as the day goes on. I had a bunch of antibody tests all negative.

I had a partial thyroidectomy 30 years ago. They started me on synthroid last year when my TSH went to 4.5.

I had an MRI of the brain and Evoc potential to rule out MS. I had spinal MRI and emg to rule out disc compression - negative.

I have routine bleed work every 3 months. I became anemic last year, that subsided and I am anemic again now. Moderate spherocytes were in my blood last year. MY CK have been normal. Albumin always low, electrolytes are ok.

That is about the extent of my testing.

thanks
kathie

I just got a copy of my brain MRI to send to Hopkins. The neuro that ordered it told me it was normal. I read the report and it said "mild distribution of nonspecific supratentorial signal abnormality in which several rounded foci of mostly subcortical frontoparietal signal abnormalities are noted". I looked this up and it means lesions, one of the causes listed is MS. Does this mean I have MS and not MG? Did anyone else MRI show this?

thanks
kathie

Kathie, First, I think you need that rash biopsied. If you can find a good rheumatologist who specializes in diseases like lupus, go see them! There are things they can tell from biopsies of the skin, along with symptoms, to figure out what's going on.

As far as white matter lesions, I'm sure you know there are causes other than MS for them. A B12 deficiency, for example. Have you had your B12 levels, plus homocysteine, measured lately?

When you say "the" blood test for celiac, which one are you talking about? I was positive to the Reticulin antibody test, which they stopped doing!!! Think of all of the patients who won't know for sure if they have celiac due to that. They probably did the endomysial or tissue transglutaminase on you. There were trying to find a "magic" bullet test for CD, but there isn't one. Just like there isn't only one for MG.

Sometimes, you have to go by symptoms. And a gluten sensitivity is just as damaging as CD. You might think of trying a GF trial for a couple of weeks to see if things improve.

When MG gets worse, peristalsis (how food moves through the GI tract) slows down. Could it be as simple as food moving slowing through? Yeah. What are your symptoms?

Testing negative on SSA/Anti-Ro doesn't mean you don't have lupus. Do you have any other signs of lupus, such as body aches, swelling or redness of joints, etc.? Lupus fluctuates a lot like MG and if you don't test for it while in a "flare," the test results can be negative.

I liked this article on white matter lesions, even though it's not heavy on the science.

http://braindiseases.wordpress.com/2...hould-i-worry/

This gives a differential list.

http://www.encyclopediamagnetica.dk/...s/VM%20læs.pdf

I'm sorry so much is going on. It stinks that we have to see so many specialists in order to figure AIs out. I'm sure you journal symptoms, but it might be time to do that again!


Annie