Laura,

There's an immunologist in Plymouth you might want to consult with. His name is Dr. Ralph Shapiro at Midwest Immunology. He's about the only good immuno I know of in MN.

http://www.midwestimmunology.com/

He would probably want to do more testing, given your IgM is elevated. And he would be the one to explain it all very well to you! There could be a reason that the elevated IgM is masking MG antibodies.

http://primaryimmune.org/about-prima...r-igm-syndrome

He also knows a great deal about MG.

If you want to PM me to discuss neurologists in MN, I'll try to steer you in the right direction. Although, an appt. with Dr. Shapiro might be all you need to sort this out

By antibodies being "off," were you referring to the MG Antibodies or the immunoglobulins?

If you can go see a neuro-ophthalmologist, like Alan Weingarden at the St. Paul Eye Clinic, that would help to determine if you have ptosis and if it's fatigable. Do you have double vision or ptosis/drooping eyelids or eyebrows?

http://www.stpauleye.com/MeetOurStaf...0/Default.aspx

Doctors always pull out the old standbys like chronic fatigue syndrome, anxiety, depression, etc. It's BS. It just means they can't be bothered to take the time to figure out what is really going on.

Your B12 is inching a little low. You might want to start supplementing with some sublingual methylcobalamin. Too much B12 doesn't do any harm to the majority of people (unless they have some odd methylation issue). Not enough, however, does damage to every single cell in the body! I had a B12 deficiency years ago and it was not fun. If you see Dr. Shapiro, definitely bring all of your labs with and ask him about pernicious anemia.

Do you have any digestive issues? Have you ever been tested for celiac disease?

You definitely need a couple of more doctors on board! I do highly recommend Dr. Shapiro. You probably have more than one thing going on, I'm sorry to say. I'm not a doctor but that's the impression I'm getting.

I hope you can get some real help soon. Maybe you can try to arrange appts. in a 2 day span and stay overnight in Mpls. It's not a fun drive from Alex! I hope you could have someone do the driving, in case you have MG.

Hormonal fluctuations do affect MG. FYI.

If you do go to the ER, there are breathing tests they can do called MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). They are neuromuscular disease specific tests to see how well you are doing at breathing in and out. Also, if they do an oximetry to see what your oxygen/O2 levels are, make sure you ask if they can check them while you are walking too. MG gets worse upon exertion, something doctors always seem to forget! If your body is trying to get you more oxygen, your heart rate (resting) will go up because the heart beats harder to get that to you.

Also, if you have a peak flow meter - although why would you! - knowing what your normal is and how it is when you're worse will help. I got mine during one of my ER trips (they gave it to me because mine was half of normal).

Please do take it easy. MG is nothing to mess with. If you need more info, just holler. These guys are great at support and info!


Annie

I can't figure out how the private messaging works. In answer to your questions AnnieB...

My IgA has been elevated... the elevated IgM is new.
I have double vision... worse at night & when tired/ill & any time that I look to the side.
The droopy eyelid gets worse as the day goes on or when stressed/hot/fatigued.
I have had ibs most of my life with gallbladder issues resolved with surgery this past summer.
Celiac testing was negative though I don't do well with dairy or wheat - severe bloating.
I have been seeing a neuro & balance docs in minneapolis, but would welcome your suggestion should we seek a 2nd opinion and/or decide not to "wait & see"

Thank you for your support! I just can't accept this as my new normal - I have too much to do!

Laura

IBS is a "new" thing and might have more to do with leaky gut from our Western diet than anything!

They recently did away with the Reticulin antibody for CD, which is stupid! You might still be able to find a lab and a gastroenterologist who would order that one. Now they only do the Endomysial and Tissue Transglutaminase AB's. They sometimes do Gliadin AB's.

I would definitely see Shapiro, if I were you. If you have MG, you don't want to "wait and see." He might even redo the celiac AB's. If you're northern european in ancestry, the chance of you having CD is very high. See if your primary doc can refer you to him.

I have to wonder what your vitamin d and other vitamins are up to (or rather, down to).

I'll PM you and show you how it works.

Annie

Hi Laura,
Most of your symtoms definitely look as MG for me...
You had surgery sometime ago and the surgical environment is recognized as a cause to MG due to use of anesthetics.
Would it be possible for you to get a prescription for Mestinon and give it a trial waiting for a decent neurologist appointment?
Good luck to you and be persuasive...
Maurice.