What is the percentage of MG'ers that have negative antibodies to ACHR and MUSK? If they are sero-negative how do they finally diagnose MG?

kathie

Kathie, There are researchers still uncovering more MG antibodies! Though there are not tests available yet. So, yes, you can still have MG and be seronegative. Did your MuSK test come back already?

Have they done a CPK (creatine phosphokinase)blood test on you? Could polymyositis be a possibility?

http://www.mayoclinic.com/health/pol...-and-diagnosis

I've done as much research as I can at the moment and cannot find a reason why Indomethacin could make MG better. It would make any "itis" (meaning inflammation) better.

It might be worth a 2nd opinion by a rheumatologist. Sometimes it helps to have an other specialty have a look see at your symptoms/test results.

It's frustrating to not know what's going on. I hope you can get answers fairly soon. Take it easy in the meantime!

Annie

I found some references to inflammatory cytokines with MG and I though that might be why indomethacin made some symptoms better. Here is the site; http://www.lef.org/protocols/neurolo..._gravis_02.htm. I know you are not suppose to have pain with MG but I have a lot of muscle pain when my legs and arms get weak, they ache so bad.

I think I may have another autoimmune issue beside MG. I had a thyroid tumor removed 30 years ago and have since have fluctuating TSH. I also get skin rashes and have persistent inflammatory bowels issue. They did an intestine tissue biopsy and said I did not have gluten issue. They did alot of antibody test, ANCA, ARCH, ANA, Thyroid. They all came back negative although the sed rate and c reactive protein were high. I have not received the MUSK results yet.

I also have asthma and eczema too. I have already been to a rheumatologist. He is the one that said he though it was MG and sent me to a neuro. He also said he thought there was more than one thing going on.

If worst case scenario happens and the MUSK are negative, how do they diagnose a sero-negative MGer? The Neuro optomologist did order a SFemg but it has not been done yet.

Thanks for all your suggestions.
kathie

Annie, I do not think it is polymyositis because my creatine kinase (CK) was actually low so was my serum albumin.

The muscle weakness in my legs has gotten worse and I have it most of the day now. The muscles on the right side of my face are noticeably more droopy than the left. I have resolved the swallowing and chocking issues with changing the way I eat and drink. I had one instance of my head dropping, the same day that I could hardly move my legs. The constant fatigue has not changed much. The only other major symptom I have the does not fit MG is the diarrhea. Between the diarrhea and chewing issues I have lost 40 pounds in 6 months.

I do hope they diagnose something soon. I feel if my legs get much worse, I will need a walker,

thanks again,
kathie

Kathie, What celiac antibody tests did they run? Do you know that they stopped running one of them, the Reticulin Antibody? I was positive to that one. The biopsy for people with Reticulin isn't always positive. Like MG, there's no perfect algorithm for figuring CD out.

Would you mind describing your rashes? Do they happen in a predictable way? Are they there all of the time? When you had the skin biopsy, was it a punch biopsy? There are dermatologists who are more equipped to do specialized biopsies than others. Usually they're at universities. Also, it could be food allergies too. There are a lot of reasons for rashes.

I had a couple of punch biopsies because I get a rash whenever I'm exposed to UV's. It doesn't look like lupus but they can't say for sure what it IS. So I just stay out of the sun.

Did the rheumatologist actually run any blood tests to come to his conclusions? Did they run any lupus specific antibody tests?

Have you had your B12 checked? If you're having GI tract issues, it's important for someone (gastroenterologist) to figure out what part of the GI tract is the issue.

MG is a clinical diagnosis, backed up with tests. A negative test doesn't prove anything! Negatives don't prove positives. So a smart, MG expert would know that they would have to do other tests like a SFEMG or a Tensilon Test.

Have you tried taking gluten out of your diet for a few weeks to see if it helps the GI issues? If you have CD and have had it for awhile, it can take awhile to clear up any GI issues. People with CD have low albumin, B12, Vitamin D, iron, calcium, etc.

If your legs get much worse, you won't need a walker but a trip to the ER! Waiting is not a good thing if you have MG. Please take very good care of yourself. Since you have swallowing issues, some people actually make a tape recording of a message in case they need to dial 911 but can't speak. I hope that won't happen. If you live alone, it's a smart precaution to take.

Hang in there. I have been down so many doctoring roads that I totally appreciate what you're going through.



Annie

Possible causes of a low CPK.

http://www.ncbi.nlm.nih.gov/pubmed/7288967

http://www.clinchem.org/content/44/5/905.full

http://www.clinlabnavigator.com/creatine-kinase-ck.html

The Indomethacin almost completely relieved the diarrhea. The GI doctor did not run antibody test. I have not been back to her since all the muscle weakness started. She only did the intestine biopsy and a bunch of standard blood test, I was planning to go back to the GI DR as soon as I have the MG like symptoms under control. I have taken so many sick days already, I feel like I am jeapordizing my job/position. I know that the diarrhea is at its worst when the leg muscle weakness is bad. They wax and wane together most of the time. It sure makes it interesting trying to get to the bathroom

I have had the rashes almost all my life, They are caused by sun exposure and exacerbated by stress. The appear of my cheeks and forehead and is red and bumpy. In fact, I was standing in front of a bathroom mirror one time and the sun came through the window and within 30 seconds I watched as my normal skin changed to red and bumpy in front of my eyes within 30 seconds. If I did not see it for myself, I would not have believe that was possible. My face looked as if it was scalded by hot water.

I also had the test for RA and SLE and they were negative too. I also get the rash on my hand, arms and chest, only areas exposed to sun.

My b12 is above normal, 1200.

I live with my teenage doctor and I have tried to give her a speech about calling 911 if I could not breathe or talk without trying to scare her to much.

Thank for all your interest in my situation. It is a relief having someone to talk with about it. I cannot tell people at work although the already suspect something. I do not want to scare my daughter until I am sure. This forum has been a lifesaver for me.


thanks
kathie

You know, I think that's the hardest part - going through this kind of diagnostic H@!! alone. I appreciate everyone here for that too.

Not all skin biopsies are created equally. Do you know if they did a scrape or punch biopsy? If they did a punch, you would've had a stitch or two. Do you have a copy of the findings? I didn't think they would find anything on mine but they did, which just confused the picture in my case, however.

No one wants to be cut into a lot but it might be worth your while to get a rheumatologist in a university where they know exactly what they should be doing, including an immunofluoresence test to look for deposits. Since you've had sun-induced rashes for so long, I'm really surprised they haven't taken things a bit more seriously.

The distribution of rashes is typical of lupus. Oy. I really think you need to do some research on finding a lupus specialist rheumatologist. They ARE different.

Has anyone checked your kidney function?

The fact that an anti-inflammatory made your GI issues better is yet another huge clue.

What part of the intestines was biopsied? The small intestine or the large intestine?

You probably do have more than one thing going on. Find some more help!

Annie

Annie, it was not a punch or a scrape biopsy, they actually took a deep slice of tissue. I saw the report, it said it was indicative of anhidrosis eczema. They did upper and lower GI biopsy. The GI doctor said if the stomach issue did not resolve, she was going to do another upper and go further into the intestines.

I think I should limit myself with specialist at a large teaching hospital from now on based on my experience over the last year. I went to a rheumatologist twice now. The first time, several years ago, they said I did not meet the criteria for lupus but that is seem auto-immune and put me on anti-inflammatory drugs for a while.

I think I will wait for the MUSK and SFEMG and go from there. I will keep you posted.
Thanks so much,
kathie

Many physicians and many patients have it backwards.

Diseases (all of them!) were initially described by physicians who had no tests. They learned from their patients about their symptoms, they watched them to see the signs. With time better tools were developed which enabled physicians to examine the patient.

Those tools became more and more complex and enabled not only a better description of the illness, but also a better understanding of its mechanism and hence better treatment. They also enabled much less experienced physicians make a diagnosis quite easily. So, the art of medicine was gradually abandoned. Why bother to examine the abdomen or listen to the hearth sounds if you can easily order an ultrasound or cardiac echo? It also made everything much more efficient. You no longer have to sit hours and talk with the patient, or sit by his bed-side watching the signs, you can just order a bunch of tests and send him on his way.

But, we started to worship those tests. So, we no longer listen to the patients or to ourselves, we don't watch them to see the signs, we do a very brief examination and then we order more and more and more tests, until we are lost in the woods and no longer see the trees.

Many patients and their families also think that there is nothing wrong with them if all the tests are normal. They insist on more and more tests, which many times are as normal as those that were done previously, or even worse show some abnormality which doesn't point to any direction (because about 5% of completely healthy people will have test results which are not within the normal range, as this is the way in which the normal range is defined).

Also, those existing tests can recognize only a certain percentage of patients with a known disease (there is no test which is positive in 100% of the patients with a given disease) and obviously can't recognize a new and not yet recognized disease.

MuSK MG is one of many examples for this:
Until MuSK antibodies were discovered in patients with MG, such patients had completely normal tests.
You can argue that their illness could have been diagnosed with other tests used to diagnose MG, but the SFEMG is not diagnostic in a significant percentage (it is hard to know how many, because there may be quite a few patients with MuSK MG who were not diagnosed as MG, but as "something else", more times than not from the field of psychiatry), The tensilon test is not considered an "objective" test by many neuorlogists and it too may be undiagnostic in MuSK.

So, if you are a physician who worships tests, you end up having patients with symptoms and signs of a disease, but they are not ill.
What do you do with those patients?
You either treat them as "suspected disease" (which is bad, because your lack of conviction regarding their illness leads to a hectic management approach which may be worse than no treatment at all) or show them the door (which is as bad).

So, the answer to your question is that patients with MG and normal tests are diagnosed if they are either fortunate enough to reach a physician who doesn't worship tests or fortunate enough to have new tests developed that will be diagnostic for their illness, or both.

How many patients with MG are never given the correct diagnosis and never treated for this illness? it is very hard to know.
I am not even sure where we should look for them-in the CFS community? In psychiatric hospitals? Or do they just somehow carry on with their life and see themselves as "lazy"?

Thanks for that Alice.
I am so lazy that I like to sag my right eye lid.