Myesthenia Gravis, Lupus, and MS

[MissLauraI]

Do any of you have both MG and MS or Lupus? If so, can you tell me how they diagnosed it? Was it all based on symptoms or conclusive tests?

[MissLauraI]

Thanks Mary for taking time to give such a great detailed answer. I appreciate it. I think I am frustrated today living in limbo. Bless you!

[twopack]

These are all believed to be autoimmune diseases and they share a number of common symptoms (as do quite a few other diseases, some autoimmune, some not).  I believe I've heard of the possibility of one person having both MS and SLE (Systemic Lupus Erythematosus) or MG and SLE.  I don't remember anyone here with both and I rather doubt it is common.  Since MS pathology involves the CNS and MG pathology involves the nerve-muscle junction of the PNS it would be an extremely unfortunate person who was diagnosed with both diseases.

None of these diseases are diagnosed solely on the results of blood work or other medical testing.   An extensive history and complete physical exam would guide a careful physician to order the testing most likely to indicate where a patient's problem originates.  

Very few tests are absolutes concerning diagnosis.  Very often, a (+) is confirmation but a (-) means more testing is needed.  Think of OTC pregnancy tests.  There is ONE thing that makes it positive.  There are many reasons a woman can get a negative result.  It may mean no pregnancy exists (a true negative) or it may mean pregnancy exists but something is blocking the positive result (a false negative).

MG testing might include a blood draw for the level of acetycholine receptor antibodies, a Tensilon trial, an EMG, a SFEMG (single fiber) or a biopsy.  The blood test is 80% accurate in generalized MG, so a positive confirms MG but a negative means test more if symptoms indicate you should.  The SFEMG is very accurate to diagnose MG but isn't available everywhere and will be negative during a remission.

Lupus testing usually starts with a serum (blood) ANA.  Almost everyone with Lupus will have a (+) ANA eventually BUT not necessarily initially.  And other autoimmune diseases are associated with a (+) ANA, so additional tests are needed.  No SINGLE test is diagnostic for SLE.  Deciding on lupus as a diagnosis can take months (and sometimes years) of piecing together test results, symptoms and progression.

MS diagnosis is nothing but non-definitive testing.  Some MRI, evoked potential and LP results can be very suggestive (often called 'classic') but no SINGLE test is required to be positive for a diagnosis and no SINGLE negative makes it impossibility.  (However, if the whole batch comes up negative over time you are going to have a very hard sell for MS.)

Some people are diagnosed quickly if symptoms are explained by clearly positive test results.  For others, the diagnostic journey is much more involved.  Observation within this forum community makes it appear common to have confusing initial test results.  I don’t know if ANYONE can offer us validation of that.

One thing we know for sure here is that every one of us knows our own body and can say with certainty when it is NOT working correctly.  The world you have entered doesn't have a lot of absolutes despite claims you may hear otherwise.  We must be alert to our sources and pair with the most knowledgeable physician we can to find our personal answers.

Good luck to you MissL.
Mary

[MissLauraI]

Kathy-Thanks for explaining about the LP test. I was confused about that one. I thought there wasn't anything in the LP that had to do with MS but rather, it was just another tool to detect MS mimics instead. Sure wish they had a simple blood test too. Wouldn't that save everyone a lot of extra time and concern? Maybe someday...

[torikat32]

Hi
When they do the LP for MS they are looking for O bands that are present in the csf fluid and not the blood . these bands if present may clinch an MS diagnosis however some people will not have O bands and still have MS. I wish there was a simple blood test for MS but as of yet there isnt. I would say in my opinion that if the MG and lupus tests are negative then you do not have either one of those diseases.

Have a good day
Kathy

[MissLauraI]

PandorasBox91- what do they look for when they do the LP?

Kathy- I had the test for MG and it came back negative as well as blood work for Lupus- also negative. I was just wondering if anyone ever had these even whenb they tested negative on the blood work.

Thanks for your replies! have a wonderful night.

[torikat32]

Hi

a few years ago when I first started having problems my doctor tested me for MG its a blood test and it was negative. Lupus is blood work also but MS is a diagnosis of exclusion. If your doctor recommends the test for MG please check wiht your insurance company first it is a expensive test and they may not cover it. I believe that if its negative then MG is ruled out.

good luck

Kathy

[PandorasBox91]

Hi,

I only know definitively for MS. MS can be diagnosed based on a clinical history and examination, but they can also perform an MRI scan, examine the cerebrospinal fluid via lumbar puncture and perform special electrical conduction tests in the brain.
I think Lupus can be diagnosed via a blood test, looking specifically for anti-nuclear antibodies (ANA). I have no idea about MG. Hope this helped at bit.