[AnnieB3]

I was wondering, Mike, have your docs run your IgG and IgA or other Ig's? A deficiency of those can cause false negatives in people (IgA for celiac, for example).

A high level might cause a false positive! So it's at least something to bring up to your docs. And, of course, your patient advocate wife.

I hope you're doing well.


Annie

[pingpongman]

Yes all those tests were done. When I see my neuromuscular Dr he gets 12-15 vials of blood. We are discussing going to Wake Forest for another opinion. The neuromuscular Dr said I had the most severe form of MG. Whatever that means.
Mike

[alice md]

Whatever that means.

I would be interested to know. Because I am not aware of any clear bio-markers by which MG is stratified with regards to severity.

As far as I know the most accurate score for MG (which has its limitations) is the composite MG score. I am not aware of any bio-marker being included in it.

Further more, to the best of my knowledge most MG patients are not tested for more than the AchR antibody and occasionally also for MuSK. So, I think that there is very limited data regarding other antibodies and their clinical significance.

[pingpongman]

That's the problem with this Dr, He doesn't explain. He was on the team years ago that discovered the antibodies. He really needs to be locked up in a small room with test tubes and lab equipment. I'm guessing he said that because I tested positive for 4 antibodies. I just don't know. What made me even madder was he gave us no recommendations other than maybe try PLEX.

[alice md]

Originally Posted by pingpongman

That's the problem with this Dr, He doesn't explain. He was on the team years ago that discovered the antibodies. He really needs to be locked up in a small room with test tubes and lab equipment. I'm guessing he said that because I tested positive for 4 antibodies. I just don't know. What made me even madder was he gave us no recommendations other than maybe try PLEX.

Like I just said in another thread, there seems to be a total disconnect between the academic interest in this illness and the clinic.

I too had this feeling (with some neurologists) that I would probably be much more interesting to them if I was a lab-rat or test-tube. (And definitely much less bothersome).

Quite ironically, many times I was treated with much more compassion and human respect by scientists working on MG that I consulted, than by physicians.

[pingpongman]

My wife says he may have been talking about the degree of difficulty in treating someone with 4 positive antibodies instead of the severity of my physical condition. I just wish he would communicate with us better so we can understand where this is heading. I have an appointment with him in Nov so we will see.
Mike

[Stellatum]

I'm still rooting for the plasmapheresis. This is a totally non-expert non-medically-substantiated opinion, but it seems to me that if you test positive for all those antibodies, then filtering out the antibodies would make sense--especially because nothing else has really worked.

Abby

[pingpongman]

That is exactly my thinking. Maybe "cleaning" out my blood will help cellcept do its thing. My wife isn't happy with the idea because it is so invasive. Plus I would go out of town to a hospital for PLEX. My local hospital almost killed me last time I was there. Not one Dr or nurse knew what MG was. I understand they want you in the hospital for about 10 days so they can do several treatments.

[AnnieB3]

Mike, I'm sure it's very frustrating to not have the answers you need. Perhaps you do need a new doctor, one who doesn't mind a patient asking questions.

Before you had drugs and were newly diagnosed, did you feel worse than you do now? Have the drugs helped? There's the possibility that the drugs are harming your immune system and, therefore, making it harder to fight MG. Drugs can be helpful but our bodies work in concert with them.

Also, as you age, the body has a harder time with immunosuppressants. Our organs, like the liver and kidneys, age too! Since they are the cleansers of the body, it's important for a doctor to always check to see if they are helping rid the body of what it doesn't want too. And while your doctor might do a million vials of blood, that doesn't mean that the "right" tests are being done or that another type of doctor wouldn't be useful in taking a look at all of those results (like an internist).

And I still have to wonder if something else is going on that is revving up your immune system.

As Dr. Howard, et. al., states below, antibody levels do not necessarily correlate with disease severity - which I'm sure you know. So, that's why I asked in my other post . . . How are you feeling? A clinical exam is crucial to MG because it IS a clinical diagnosis and the clinical exam is the best way to evaluate a patient (when done well). You can't tell how a patient is doing when they've been sitting quietly in a doctor's office. They have to see us MOVING in order to "get it." That's one reason Dr. Howard will often do exercise exams with PT, before and after Mestinon, to objectively see how patients are doing. Very smart!

This might look pedantic, but HOW antibodies are produced is an important factor for a doctor to consider. You may want to consult with an immunologist. There might be precursors in your body that are running amuck that have nothing to do with the disease state itself.

http://www.cellsalive.com/antibody.htm

This might be helpful to look at the many variables of antibody development.

http://www.hindawi.com/journals/ad/2011/740583/

Have they checked your IgG subclasses? There are 4 subclasses of IgG. Here's Dr. Howard's article.

http://www.ncbi.nlm.nih.gov/pubmed/3479935

Mike, I have no idea what your other medical conditions might be or what other drugs you're on. What would be helpful is for someone to do a thorough examination of all of that and if something is indeed making your overall immune system worse.

Try not to focus on the "many" MG antibodies but on how you feel. IMO, you really need to find a doctor or two who cares enough to spend time with you getting to the bottom of all this. Though, doctoring can be a toxin in and of itself.

My Dad had dialysis. He died of cardiac arrest during it. It is basically the same as PLEX. Please do realize that it can cause harm for those with heart disease. And it is no easy procedure. In your case, it would probably be best to try in a hospital setting and not a clinic setting. I understand that the "concept" of it is very logical and appealing but the reality of it is far different.

There are also alternative therapies - that have been studied - that can help strengthen (not overexcite) your immune system, like chlorella (sea algae). But, again, you have to look at the impact of all foods and supplements and their possible reactions with drugs.

Take care,
Annie

[pingpongman]

I have 3 doctors I see on a regular basis. I saw my GP (internist) today. I have 2 new skin cancers that makes 4 this year. I have a regular neuro who I love. He listens and is not afraid to admit he doesn't know and has referred me for second opinions. My 3rd Dr is a neuro-muscular dr at the ALS center at a large hospital. He is brilliant but a jerk. He normally gives me a very detailed exercise routine and compares notes with my other visits. His exams take at least 1 or more hours. I only see him when my regular neuro suggest I see him. He is highly thought of in the MD community. I think he went to school with Dr Howard. I do have a copy of Dr Howards book which I find helpful.

Now for your question on how I feel. When this all started 2 years ago I thought I only had double vision. But after a visit to the neuro-muscular he said my MG was generalized. At that point I was capable to do whatever I wanted. I will use ping-pong as example. When this started I could play almost constant for 2 hours. My legs would get tired and that could have been a hint. Today I can only play for only 15 minutes then I have to stop and rest and catch my breath. This MG progressed as follows: double vision, weakness in legs, swollowing issues, breathing issues with activity, and latest is weak voice as I get tired. So yes I am way worse today than when this started.

As for the drugs, I took Imuran for one year but it made me so sick we had to stop it. I lost 35 pounds. What is really funny when I stopped taking it within a week I could eat and felt like Superman. This lasted 6 weeks then it was back to my weak self. My neuro said the Imuran was working but the side effects masked the results. I am currently on Cellcept (7 months) plus the usual Mestinon, IVIG and tapering off Prednisone (current 20mg). I am convinced that mestinon and IVIG have done nothing for me. I stopped my mestinon 180 time release and can't tell any difference, same with the 60mg which I have missed with no ill effects. I can't recall exactly how many IVIG's I have had but it is a bunch.

Now for my blood work. My first bloodwork was negative. 6 months later I was positive for binding. Then 6 more months and I was positive for binding, modulating, Striational and calcium channel. My wife thinks my problems are coming from the striational antibodies.

As for my heart I see a heart Dr once a year and my blood pressure is excellent for my age. As you can see my wife drags me to any Dr she can find. You may have forgotten but my Mom and 2 of her sisters had MG plus we now think my sister has it also. Phew my finger is tired.
Thanks
Mike