Karen, Have you had the MuSK antibody test, as Alice suggested?

The one thing that doesn't fit MG is loss of peripheral vision. Did they give a reason as to why that is happening? Was it a temporary thing or is it still there?

Ptosis, especially long-standing ptosis, can CAUSE astigmatism. That's what caused mine. I've had MG since birth or shortly thereafter.

You don't have fatigable weakness so badly that you have to be intubated from nothing going on! ;)

What do you mean by "immune IgA count" and that it revealed something. Are you talking about the serum IgA blood test? Was yours normal. I'm not certain what you're saying - can you clarify that? Did they run the IgE, IgM, IgG too?

"Your immune system is noticing the incision." Wow. Really? That's not very scientific. So your immune system, "sensing" that there had been surgery, is causing your muscles to weaken to the point of paralysis and intubation. Do they think patients really buy that BS? :eek:

MG, either ACh, MuSK or any other of the unidentified antibody MG's, is quite simple. 1. Do an activity 2. Muscles get weaker to varying degrees. 3. Rest (and drugs) make muscles stronger (relatively).

No other disease is quite like MG, except LEMS (Lambert-Eaton Myasthenic Syndrome) and CMS (Congenital Myasthenic Syndromes, which are genetic and not autoimmune). They all involve variable muscle strength either worsened or improved with activity. LEMS can initially improve with activity but then get dramatically worse. Some CMS are like MG in that you don't have enough ACh (acetylcholine). Other CMS's are where there is too much.

Did the start of your symptoms in 2009 coincide with pregnancy at all? Just curious.

Did they do a pathology of your thymus? The fact that it's growing back so soon is interesting.

Even if you follow the protocols for MG during surgery, the fact is that the drugs given during any surgery have the potential to make it worse. You can take all of the precautions in the world and still get worse. Were you given morphine or any other pain killers? Morphine can tank an MGers breathing.

Sometimes with Mestinon, it's not only the space in between taking it but the dose amount. Do you have a good neuro to talk all of this over with? Some people do better on a smaller dose but with more frequency. It all depends! Don't make any changes without talking to your prescribing neurologist first!! You are obviously not doing well and any changes could make you worse, like Abby mentioned about cholinergic crisis being an issue too.

Myasthenic crisis: Not enough acetylcholine getting to the muscles.
Cholinergic crisis: Too much acetylcholine getting to the muscles due to too much Mestinon.

Keep talking! For that Johns Hopkins doctor to so arrogantly say this isn't MG is nonsense. And, BTW, an EMG or SFEMG in MG can be positive and then negative and then positive . . . Oy. A good MG expert knows that!

Take it easy. And even though you're a Mom, there are ways to reduce any impact on your MG. Or "incision disease." :cool:

:hug:
Annie

Did you totally lose peripheral vision or your peripheral vision is just not clear. I know that if I do not look directly head on at something that my vision is blurry or double due to weak eye muscles, which of course progresses as the day goes on.

I just took my first mestinon pill and the first improvement I noticed is how much better I can see and focus.


kathie

Great, here is more info to help..
 

THANK YOU ALICE MD-FIRST OF ALL, I HAVE BEEN HOPING TO HEAR FROM YOU WITH SEEING THE GREAT UNDERSTANDING YOU HAVE IN OTHER THREADS IN THIS FORUM:
OK so MuSk testing has been done, and was neg. The IFE tests show increased IgG and decreased IgA; normal CMP, copper, SPEP, thyroid panel, ANA, and Mayo panel.
I have been offered PLEX 4 times, but IVIG was running. I have very bad vascular access and need a port placement, but with my hx of respiratory and throat failure, I can't risk another surgery.
I have been weaned down off Mestinon to 1/2 tablet 3 times a day, and I could hardly move without assistance, and was in bed for days. It was hard to see, breathe, eat, and walk.
I also wanted to add that I have not been able to regulate my temperature when it is an indoor warm environment. I will sweat profusely. I think it is from my muscles working harder, like running a marathon, but not able to cool down. Afterwards, I have to go sleep, so I can stop my muscles shaking so badly, to function. Sleep will help the symptoms tremendously.
I have not needed respiratory help at home non-invasively, but they are stopping my IVIG now, so I might be needing something sooner.
I am on a steroid taper now, and the meds give me energy, which helps me to function. I really hope this added information will help with figuring out what I need to do or say to have a clear DX and be able to stop symptoms everyday, from ruining my life, and families lives.

Great info!!! answers
 

Annie, THE EYE SYMPTOMS --PERIPRIAL VISION WHILE DRIVING WAS GREY, AND COULD NOT SEE, BOTH RIGHT OR LEFT, YES STARTED WHEN I WAS 6 MONTHS PREGNANT WITH 3RD CHILD. THE OB STATED IT WAS HORMONES AND not to get glasses, because it would get better...but my vision was blurry. That has come back now. Also with this pregnancy, I was having severe uterine contractions like preterm labor, but no cervix dilation, was that part of myasthenia? I didn't tell the dr's about the contractions...
In my answer to Alice MD, there was a increased IgG and decrease in IgA. what does that confirm?.. an Autoimmune disease?
The pathology to the Thymus was not thymoma, thymic hyperplasia and the hospital stated myasthenic based thymic tissue
In regards to the SFEMG, and EMG's being positive and negative, at different times makes me feel a little better. I love medicine and know that tests can vary very much...I also took some of the EMG print outs, and from what I have researched, the decreases in Amp and Area % are shown just like an Abnormal MG EMG results.?.?.?
the Neuro's at Hopkins aren't MG specialist

peripheral vision when driving was grey, then the TV was blurry, and then after looking so hard and squinting, my eyes would hurt.
My vision was getting worse, and you know the test at the eye dr's, where the little black dot floats around, well, that is what I could NOT follow at all.
If I get really weak, Feeling "sick" I can't get my eyes to see and focus at ALL. Vision is gone, because my eyes won't stay straight.

Go to another neuro. This is outrageous. You need a neuromuscular specialist. I'd also get tested for Lyme disease and all the coinfections as fast as you can.

Karen, There are a lot of reasons for an increase or decrease in the immunoglobulins. I can't believe they didn't do the subclasses for IgG when they found an increase to see if there is a particular subclass that is increased.

These are basic but helpful to some degree. You need an immunologist or a good internist to explain it.

http://kidshealth.org/parent/system/...globulins.html

http://labtestsonline.org/understand...ulins/tab/test

http://emedicine.medscape.com/article/136580-overview

http://www.mayomedicallaboratories.c...erpretive/8160

I really hope that they didn't miss a thymoma. Since it's still growing, that could be a concern.

Johns Hopkins has some of the best MG experts around, allegedly. ;) Why they haven't referred you on to one is bewildering.

You need an EXPERT, like Tracy said. You are sick, need help and some more answers about your health. I am so sorry you are dealing with this. A good doctor makes all the difference in the world. It takes more than expertise to be a good doctor. It takes them being a good human being too.

:grouphug:
Annie

great reading, and I did have a reaction to a dose of IVIG in the hospital in January. Hives, itching, redness near the vein site, up the vein at the elbow and redness in the same side of my neck...probably because of the IgA antibodies in the IGG??? I am envious of all of you that were able to have a clear blood test/diagnosis to get the best treatments.
I am hoping that Hopkins can refer me along like you all are doing, ;-)
Thank you for all the information! It makes me really happy that I found this forum and get some new thoughts for my predicament.

Karen, Did I miss something here? You have IgA antibodies? When did they figure that out? Before you had IVIG?

I really think you need an immunologist to consult with.

My last crisis symptoms was 12/31/12, and hospitalized 5 days. Johns Hopkins had done the IFE panel to show changed in IgG and IgA but this wasn't emphasized to be a problem.I had not had an issue with ivig prior to this hospitalization. Reading the websites provided in this forum, the site states the IgA increase can cause anaphylaxis with IGG. I agree with seeing the Immunologist. I am very frustrated that I am thinking and scheduling soooo many Dr appts and trying to get a handle on my symptoms and diagnosis and have had zero help from any doors in ANY way. This confuses them and have told me to go somewhere more advanced because this is a complex case. I really hope to get the facts straight with help, and be able to figure this out. It seems I am the only one who cares!