Hi Debra,am sorry to gear all that you're going through, but am glad you found this site and have all the pros here helping you! The advice they give are truly wonderful, especially Annie with all her wisdom and lots of tender loving care from the rest. I do hope they get things sorted out for you soon!! Hugs..

thanks connie, i know. . .i really need the help and support and i am so thankful for all the wisdom and thoughtfulness of everyone : )

Annie, did you see the last note? I know I have a lot of questions. . .sorry. You are just soooo helpful.

And, I wanted to ask you how long are you supposed to be off pred? I can hold the morning dose and it will be 28 hours or so. I just am so confused at this point. It's like I am stuck in this horrible crisis where they will only treat the symptoms until they are certain of the disease since I am sero-negative. But I probably (?) cannot get better without treatment of the actual disease, right?

And when I mentioned plasmapheresis, the doc said I was getting WAY ahead of myself, clearly they won't give me treatment without testing to be positive of the disease first. And it sounds like I need to try to go off the meds somehow so I don't get a dirty test but I may end up in the hospital trying to get to the testing! What do people do in my case?? Is there a solution? How do people get past this?!

debra

Debra,

I'm so sorry you're in the midst of all of this. It all feels like a catch-22, doesn't it? My symptoms are much milder than yours are, but otherwise I'm in the same situatiion: seronegative, and can't get treatment until they diagnose me for sure.

I just wanted to mention that my neurologist told me that he's seen cases where the antibodies test negative at one time, and then positive later on. He said he had a patient recently whose first test was negative, and whose second test (not too much later) was very strongly positive. So it's not just some sort of borderline thing, either.

I'm being tested a second time for the AChR antibodies. After that, if need be, I'll be tested for the LEMS antibodies (and I'm getting a special EMG test for LEMS). I was tested once for the MuSK antibodies, too--don't know if they'll repeat that one.

I have to go off the Mestinon for my next SFEMG soon...not looking forward to that! This appointment is exactly the kind of stress that really wipes me out normally, and I have to do it off the Mestinon. I've asked my husband to take time off work (he's a teacher, so that's not easy) to take me.

I hope you get some answers soon! I'm so sorry you're having to put up with all of this turmoil when you're so sick as it is. I hope your doctors will see fit to retest your antibodies, too.

Abby

I am a bit confused...I don't understand why they are asking you to stop taking medicine which may cause your MG to get worse (assuming you have MG, or even that the medicine you are taking is making your symptoms better).

I take only Mestinon for my MG and this drug only treats the symptoms of MG but does nothing to make it better. All of the drugs given for MG only treat the symptoms! (At least this is what my doctor said). There is no cure for MG although some people do go into remission.

So I guess what I am wondering is this. If the Mestinon and/or Pred you are taking is helping your symptoms, why not just leave it at that unless your condition gets worse? Why risk getting worse just to have tests done and then the treatment is the same as what you have before the tests?

Am I missing something?

As for me, my doctor tells me my symptoms are "consistant with MG" and not that I have MG. The Mestinon is working so that is good enough for my neuro and good enough for me. In fact, I would refuse further testing unless I start getting new symptoms that aren't typical for MG. I hate those tests! Makes the MG worse.

I do understand you are sero-negative and I tested positive for antibodies...but still, if the treatments are working why the further testing? Especially if it may make your condition worse.

Sorry for rambling, just worried about what could happen if you stop taking your medicine even for that short time. I know I forgot my Mestinon once thinking I had taken it and left my house...I didn't think I was going to make it home and almost dialed 911, but I did make it home, just had to keep parking by the side of the road and resting. And I only missed my Mestinon for a short time! It scares me to think about! Maybe my MG is worse than yours, hopefully.

Sorry for all that you are going through, take care of yourself.

Sorry, Debra, I haven't been feeling great and I don't always check back when I'm like this.

I have to ask what you mean by "what the mestinon will work on." Mestinon only works at keeping acetylcholinesterase (enzyme) at bay so that acetylcholine can stay in the neuromuscular junction longer. Mestinon is a cholinesterase inhibitor, because it inhibits that enzyme. Caffeine and nightshades are cholinesterase inhibitors too and do the same thing. If you don't understand that, I'll clarify it even more, ok? For example, if you are on a high dose of Mestinon, like 90 mg. like I am, and drink lots of coffee and eat a potato, you may get too much acetylcholine and have symptoms of a cholinergic crisis.

You don't have to stay off of the foods! That "theory" hasn't been proven yet, even though the science behind it is rock solid. A caffeine withdrawal headache is really awful!

http://brain.oxfordjournals.org/cgi/...rt/131/10/2553

Was your doctor testing for that? They may be trying to do a differential diagnosis on you due to the lack of MG antibodies. I can only assume they've tested CPK (creatine phosphokinase). That isn't specific to any one disease.

Glutamic acid/glutamine can make migraines worse. You know, like in monosodium glutamate. That issue is separate from the MG issue.

This is probably the one thing that gets me so mad about doctoring. They don't fully diagnose a patient with MG, then they give the patient drugs because they aren't doing well, then they say they aren't sure they have MG and pull them off of the drugs that helped them. I am by NO MEANS advocating any change in drugs - I can't, I'm not your doctor!!! You have to have a conversation with your doctor about all this.

They should've done an EMG while you were in the hospital. A Single Fiber EMG is the best to do. What if they don't find anything with the EMG? Then you get to be poked and charged twice! It's your decision of what you want to do. Sometimes it is useful to do the regular EMG, where they often do the RNS (repetitive nerve stimulation) along with it.

Plasmapheresis is what they not only do during an MG crisis but it is used as a diagnostic tool when a patient suspected of MG is having obvious muscle fatigability, all clinical signs point to MG and other diseases have been ruled out. This tells me that your doctor is maybe not up on everything MG-related. MG specialists have a deeper understanding of all things MG.

The Congenital Myasthenic Syndromes are a group of literally hundreds of different gene mutations that can cause either too much acetylcholine, not enough or none at all.

I think you need to talk to your doctor. A test can be rescheduled. I know it is important to figure out for sure what is going on with you but you just had a crisis. From what I know of withdrawing from Pred, it has to be longer than a day because the effects of Pred last a long time. The effects of Mestinon have been shown to last anywhere from 4 hours to two weeks (in a study done by Dr. Howard). Mestinon may leave your body (be excreted) within a matter of hours, as would Pred, but if a drug is still having an effect on your body and, therefore, your disease, then it would affect the damn test as well. Don't these doctors take time to think this stuff through?

Susan, that is why they need to do the EMG or SFEMG without drugs. She won't get an accurate result otherwise. And, yes, it is dumb to do it right now when she is still recovering. But the longer you stay on Pred, the more your body gets "hooked" on it and the harder it is to get off of it!!!

I hate "the cart before the horse" doctoring.

Debra, You have to go by how you are feeling. If you think it's a danger to your health by withdrawing from drugs right now, then only you and your docs can make that call. If you think it is an acceptable risk, again, only you can decide that. Sometimes they put patients in the hospital to withdraw, so they can keep an eye on your stats and give you supportive care like oxygen.

I hope that answers your questions! And I hope you will get the answers you really need soon.

Annie

Your doctor is right but only
-for Mestinon which counteracts the antibody action,
-for IVIGs and PLEX by temporarily reducing the antibody quantity in the blood.
As far as steroids and other immunosuppressants are concerned, they act directly on the immune system to decrease the production of antibodies.
A few other drugs, like cyclophosphamide, are supposed to reboot the immune system.
Maurice.

Annie, thanks for the explaination. I do understand why you have to be off of the drugs to do the testing. The drugs make the tests come out normal.

I don't understand why a doctor would request a test if we don't do well without the medicine, it seems like too big of a risk. These tests should have been done right away before giving the drugs.

I dont understand why do these tests if the drugs are helping reduce the symptoms...why? Doesn't the fact that the drugs reduce the MG symptoms show that a person has MG just as much as a test? And even if the tests come out positive, we resume the exact medicine as before the test. What is the point?

I don't like the way every neuro seems to handle MG differently. It seems that they really don't know what they are doing, at least to me. With most other disorders and health issues there is more of a standard method of treatment, with MG it seems like they have a list of things to try and each doctor picks and chooses from that list.

Annie, you don't have to answer my questions, unless it is for someone else. I am having a bad day and my thinking is a little foggy...and I feel frustrated about medical treatments today. I don't like the system. I hope others have better experiences than I have with the medical system.

Thank you Annie.

I know, Susan, it's such a crap shoot being a patient. But since so many diseases "look like" other ones, and the treatments are different, it's best to know for sure what you have before you have drugs.

What if Debra - for the sake of an example only - has CMS? The treatment for those syndromes does not include immunosuppression since they are not autoimmune diseases. I wouldn't want a drug that had the potential for pretty bad side effects when I didn't even need it!

A SFEMG is not specific to MG. Neither is a Tensilon test really. That's why a clinical exam, in combination with all other testing like pulmonary function tests, is essential in people who are seronegative.

Doctors are often thinking not of the patient but of a potential lawsuit if they get it wrong. Well, it takes . . . balls . . . to be a doctor and help a patient who doesn't fit neatly into an MG algorithm. While I understand where they are coming from, they should've gotten it "right" from the get go. If they did that, they wouldn't be so open to lawsuits!

And, yeah, in Debra's case, her health and being able to breathe and move is more important right now than a test. Doctors often only see the "goal" and not the patient. The point in diagnosing is not to get there but to get there SAFELY.

With all the conferences they go to, you'd think they'd have a handle on MG by now. The problem is that they have a narrowly defined version of what MG is and so those patients who don't fit neatly into that are often pooh-poohed or mistreated or not "treated" at all. Like I've said before, I think doctors need to stop having "Gold Standards" for diagnosing and start having "Sensible Standards" for it.

And this defining MG as "possible" and "probable" and "definite" is completely silly. If it's only possible or probable, than keep doing testing like a muscle biopsy until it becomes definite!!!

It stinks that not every patients gets what they need. And we're often so worn out that we can't be our best advocates.

Thanks everybody for all your input!!

Desert flower--I do not want to be on prednisone forever or even a long time. When they tried to pull me off, I had swallowing problems, breathing problems and choking problems. I am concerned that means I am still in the crisis and cannot safely go off pred at this time and need to treat what is the underlying issue.

Annie--the other things that Mestinon will work on that I was referring to was the list of diseases you mentioned that it will help with the symptoms of. Maybe that gives me a clue as to the differential diagnosis they are working on with me since Mestinon is having a big effect on me.

Also, that article does look like the name of the blood test if I recall. . .interesting.

They should have done the EMG in the hospital and they considered it but they said they did not trust their techs and that it was much better done as an outpatient by an experienced neuro expert. They wanted it done right.

Sounds like I am going to just have to weigh everything and pick the most safe and effective thing which will not be the best of either world. There is no great solution to this problem right now at this particular time and the longer I wait, the longer I am on pred.

Should I ask for a muscle biopsy? I hadn't heard about that option. Is that definitive? Or do you have to be off meds for that too? It must be hell but it's not like I haven't been there and back already. . .debra

just wanted to add that i had a blood draw for LEMS today for athena labs and that all other labwork came back negative, including celiac.

one was for that glutamate thing and it looks like people with ALS have an excess production of it so i am guessing that maybe we are ruling that out? i sure hope so!