antibody test
 

How long does it take to get the antibody test back? Is it done so rarely that you have to wait a long time? It has been almost a week and I have no results yet.
Trying to be patient in limbo,
kathie

Mine came back in about a week. They sent it off to the Mayo Clinic in Rochester I believe for processing.

Just give the doc office a call. It might be sitting there, or you can ask when they think the results might arrive. Since you had a lot of testing done, I wouldn't be surprised if it takes 2 weeks (or maybe even longer, sad to say.)

My HMO network posts all my medical info including test results online. I can see the regular chem metabolic results are back but no antibody results are posted yet. I was wondering if the regular labs rountinely did this test or they had to send it to a special lab.

I hope it is back by my neuro appointment next week or I think I should re-schedule it.

Thanks for the feedback
kathie

This will not be in your case but where I live in Europe it took 3 months!!!!
You know why? Because the fridge had to be full of potential myasthenic samples before being sent off to the lab, and it takes a long time to fill that fridge for some strange reason. The healthcare system is great some places in Europe - that is - until you get sick!!!!

Good luck - hope you get some confirmations soon :)

Anacrusis, that exactly what I was afraid of. I am concerned my blood sample is stuck is some refrigerator waiting for a dozen more prospective MG patient samples before being tested. I will give it another week and hope they sent it to a specialty lab.

kathie

Don't give up hope, Kathie! Mine took three weeks, and I read here, at the time, that that was typical.

Abby

Abby that's what my projected wait time was as well, three weeks-if I remember correctly (which is almost an oxymoron).

Two more weeks Kathie, torture isn't it?

Oh I´m so sorry Kathie!!! I should have told you that story after your results came back! :Doh: Anacrusis....

It took me 2 and half weeks to get my antibody test results back. I saw on the report that they were sent out to a lab in Utah 2 days after the blood was drawn. I live in Michigan.

Thanks everyone, I will just have to be patient for a few more weeks
kathie

still no results
 

I still do not have any antibody results yet. I had my neuro visit. My evoc potential in my right eye was borderline, the brain MRI reading did not mention lesions. The neuro called it optic neuritis and put me on a non-steroid anti-inflamatory meds while waiting on the antibody results. It seems like he is leaning toward MS. I read somewhere that 50% of MS patients are first diagnosed with optic neuritis.

I guess the antibody results will be very delayed now because our area was hit so bad by the hurricane.

I feel I have enterred a deeper layer of limbo and I am not entirely certain I am heading in the right direction. I have my regular GP visit in 2 weeks and I am going to ask for a referral to a neuro-optomologist. Did anyone else go down this route?

thanks,
kathie

A neuro-optomologist is excellent choice. Alot of people here got excellent results from a neuro-optomologist. You are lucky to live near one. They are very hard to find. Good luck
Mike

lost antibody test and my patience
 

I cannot believe it. After waiting 3 weeks for my antibody test, I find out that the phlembotomis messed up and my blood work was never submitted for antibody tests. I now have to go get blood work done again and start the waiting game all over.:mad:

I guess the test is so rare she did not know what color tube to draw.
kathie

I just had a MG panel taken yesterday. We will see who gets theirs back first.
Mike

Oh, Kathie, I'm so sorry! I know how that feels. Of all the emotional turmoil of this disease, I think I found the time when I was waiting for the antibody test to be the hardest. You feel like, "OK, tell me what I'm dealing with so that I can start dealing with it. But how am I supposed to establish myself mentally when I don't know?"

Hang in there. I'm sorry you're going through this.

Abby

Thanks so much for your understanding. I am not sure if when the results comeback if I will cry with relief of finally having a diagnosis or cry with sadness of being diagnosed with a terrible disease or cry with frustration at a negative result and no diagnosis, but at any rate, I am sure I will have a good cry.

kathie

The antibody test came back negative and the neuro diagnosed me with optic neuritis and put me on an anti-inflammatory. My eye felt better and it stopped dropping for a while. He did not do the MUSK antibody test. After the prescription ran out, all the funny sensations and quivering lid came back again.

I called my GP and asked to go to an optic neurologist. I had the appointment today. He did some test and found my right eye had a larger pupil dilation and did not respond well to looking up and down. He said he thought I have MG. Finally, some one who listens. He is doing the MUSK test and the SFEmG. I will have a bit of a wait for the SFEmG.

I have been feeling better with the cold weather, but I had a scary episode last week where I could hardly move my legs, it lasted only a day.

Alice, why did the anti-inflammatory help my eye?

ALso, does anyone else get the quivering of the eyelids besides the droopiness? It looks a little freaky when they start to quiver and my field of vision starts to vibrate.

thanks
kathie

Kathie, First, which anti-inflammatory med did you take?

It's possible to have TWO conditions. Or more. ;) MG is not an inflammatory condition.

So, your eye symptoms returned when the anti-inflammatory ran out? Or were you on Mestinon and that ran out? Just trying to be accurate. Do you have a lot of eye strain during the day?

What did the Neuro-Ophthalmologist think of the optic neuritis diagnosis?

When you had that episode where you could barely move your legs, had you done a lot of walking that day or in the past two?

I'm glad you have a couple of doctors who are taking you seriously! N-O's have very specific tests to look for fatigable muscle weakness, which is why they're so great to go to.

This diagnostic journey is tough enough without people treating you poorly! What's seriously funny is that it's often the doctors who need the reassuring while trying to figure this all out. :rolleyes:

I have to say that I'm concerned about your episodes of sudden weakness. It would be a good idea to take it as easy as you can until you get diagnosed and treated. If you experience generalized weakness, shortness of breath where you can't take a breath in or out or are unable to swallow, open your eyes or move, you need to dial 911. As long as you know the parameters of this stupid disease, you can take care of yourself. So try not to be scared! But you do have to act quickly if you get really weak.

I'm sorry you've been through so much. I hope you get answer soon. Remember, even if your antibody tests are negative, it doesn't mean you don't have MG. Antibody tests fluctuate and you might test positive at a later date.

Take it easy and try to do something to get your mind off of this. :hug:

Annie

Annie, they put me on indomethacin for 2 weeks. None of my symptoms (fatique, muscle weakness, walking problems) improved, but I did notice that my eye drooping and quivering did subside, but immediately returned after the prescription ran out. I work on computers for long hours, so I definitely experience eye strain.

I have not been on mestinon yet. The neuro-optomologist said he though it was MG, he never explicitly said it was not optic neuritis.

The episode when I had great difficulty moving my legs followed a day after I had been standing a lot. It was also after the indomethacin (COX 1 & 2 inhibitor) ran out.

Kathie

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. :cool: 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.

:hug:

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:wink:

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.

So, I am still waiting on my Musk antibody tests and starting to get nervous as to what they will do if it is negative. Annie mentioned that they are still discovering more MG antibodies, so I did a little research and this is what I found. Researchers have found three types of striational antibodies: antibodies to titin, ryanodine receptor (RyR), and Kv1.4 (Voltage-gated K channel (VGKC)) as well as Anti-striated muscle antibody (anti-SM Ab) and low-density lipoprotein receptor-related protein 4 (LRP4) associated with MG. Has antibody ever had blood tests or positive results to these antibodies? Does anyone know of any more antibodies associated with MG?

thanks
kathie

Yes I'm positive for Anti-striated muscle antibody and 3 others.
Mike

Pingpongman, What other antibodies came back positive? How long and how many doctors did you have to go through before they tested for these other antibodies? Did they ever question the MG diagnosis once the Anti-striated muscle antibody came back positive?

Thanks for sharing your results
kathie

I went through 3 or 4 neuros before I found the 2 I currently see. One is local who I see every 3 months, the other is 45 minutes away and see every 6 months. The one I see every 6 months is the "expert". He was on the team that discovered some of the first antibodies. The 2 doctors confer on my case and work together very well. The "expert" does the full MG panel each time I visit.

My blood work has gone like this. First test negative, 2nd positive for binding,
3rd positive for binding, 4th positive for, Binding, Modulating, Anti-striated muscle, can't remember the 4th. I have a panel that was just done but haven't gotten the results. My Dr was in Chicago for a conference. I'm going to try to get them today. He did another panel my last visit because I was doing so well. He was curious as to what my results would show. He said my case was the most complicated he had seen.

They haven't changed my meds in 6 months because I am doing pretty good. I currently take Mestinon, Prednisone and Cellcept. We stopped my IVIG.
Mike

My antibodies tested positive jan 17, 2012, since I had my Thymectomy in May my antibodies are now testing negative that was in September!

Is that normal?

pingpongman, Thanks for the info and I am glad you are doing so well. I hope I have as good an experience with my current doctor (optic-neuro). He is suppose to be an expert also and is an hour drive away. I will keep you posted.

If anyone else finds any more link to MG antibodies, please share them.

thanks everyone,
kathie

Well, I waited 10 days and then called the lab about my Musk test. They said it would be another 2 weeks. I received a call from the neuro optomologist, my SFEMG is scheduled for June 2013. That is right, there is a 7 month waiting list for the test. Did you all have to wait that long? I hope the antibidies come back positive or I do not think they will give me any meds until they have a positive result.

kathie

Got some of my bloodwork via phone. Nurse is mailing the papers to me and should have them by friday. Anyway when the blood work was taken I was feeling better than I had in a year which is the reason the Dr wanted extensive bloodwork taken to see what it showed. Well anyway all 4 of my positive antibodies had actually increased. My wife is researching now to see if it means anything.
Mike

Kathie, Well, that really stinks having to wait so long. If it ends up that the MuSK isn't positive, do not despair! That doesn't mean you don't have MG.

A lot of the "new" MG antibodies don't have a test for them yet. And you might end up having a positive antibody down the road. They do tend to wax and wane.

Mike, If I were you, I'd have my primary doc check for the possibility of a tumor. It doesn't mean that's what is causing your antibodies to increase though. And, as you know, an increase doesn't necessarily mean a worse MG clinical picture.

Mike, let me ask, do you get any vaccines on a regular basis? The Squalene in vaccines can supercharge ANY immune response. I can't remember, have you seen an immunologist? I hope they can figure out what's going on.

Annie

Annie I haven't had a shot in years. I will discuss with my main Dr (wife) about seeing an immunologist. I see too many doctors now but guess another won't hurt.
Mike