Myasthenia Gravis - I has it?

Miscellaneous and Personal Stuff I Must Share
1

I had dizzy spells earlier this year, which had me bouncing between a neurologist and an ENT doc. My last visit to the ENT, he mentioned multiple sclerosis, so I decided to talk to the neuro about the variety of problems I’ve had the past few years.

I decided to not mention MS. The neuro decided to look into the fatigue so he had me do a few more tests, including Vit. D deficit, sleep apnea, and myasthenia gravis. Yes, yes… and yes??! Just to confuse matters, I’m not having any obvious symptoms of MG, just a (very) positive blood test.

Vitamin D is easy enough; I’m now on a CPAP (which I’m calling a bed snorkel - to Bob’s amusement). And I’m off on another round of connect-the-Docs. Next we had a CT-scan of my chest, which found a larger than normal thymus (and for my age, larger than normal really means that you don’t need a microscope to see it), a couple of wee dots on my lungs, a fatty liver (Bob said that I’m a silly goose, I told him he’d better duck), and splenomegoly (no one seems to concerned about that).

In the middle of all of this, I had a stress test (believe it or not, my heart is in pretty good condition, but my BP is up).

The thymus is important because that is supposed to disappear around puberty, and its function is to generate antibodies until then. MG happens when your body produces antibodies to the receptors which are involved with nerve impulses telling voluntary muscles to move. Eventually, these receptors are burned out, and the muscle stops working. It’s not uncommon for people with MG to have benign thymus tumors which, when removed, improve the MG problems.
I’ve now been to a pulmonologist and a cardio-pulmonary surgeon. The first one didn’t do much except to tell me that the freckles on my lungs didn’t look seriously problematic(yet), and to recommend me to the second one, who would be doing the actual surgery. The surgeon is quite happy with the idea of taking my thymus out (like I said, it doesn’t seem to be necessary at this late date).

Since I last talked to the neuro, I’ve noticed a few things that I would not have otherwise even thought about – double vision when I’m especially tired, and feeling like I’m taxing my arm muscles a bit too much when I’m just pushing a grocery cart.

By the way, MG affects only about 1 in 100,000 people. I’m a special snowflake, aren’t I?

2

I’m sorry to hear of your diagnosis, Zyada. Have you done the Tensilon test yet? In nursing school, that sounded so interesting (obviously, not such a cool thing if you are actually being diagnosed by the test).

I’m so stealing the bed snorkel designation for the CPAP, by the way.

3

My husband just started on C-PAP, we call it a nose hose. :smiley:

I’m sorry to hear about your troubles, but you seem to have a good attitude.
Better they found out early, before your symptoms got worse.

When I worked in bone marrow transplant research, we had a group of patients that had thymus transplants (harvested from still borns, not fetuses) to see if it would help them remanufacture T-Lymphocytes. (T for thymus) We make our T-Lymphocytes during the first years of life. They then “teach” the Lymphocytes from the bone marrow (B-Lymphocytes) how to fight infection.

Good luck, keep us informed.

4

A friend of mine was experiencing some symptoms including slurred speech and fatigue. I had just handled a case involving MG, so I jokingly said, “You probably have MG.” Well, one removed thymus and a nice zipper later… :rolleyes:

5

Am I the only one who read this entire thread in LOLCAT?

6

The problem that I’ve been running into with the C-PAP is that if I get the humidity high enough to be comfortable, it tends to condense in the tube. So I’m crocheting a wrapper for the tube to cut down on the condensation.

Now I’ll have to call it a nose hose cozy. :smiley:

7

Fascinating idea, that. My CPAP was called Darth Vader. Now it died, and died again. I’m on my third, which makes it D-3PO. :smiley:

The humidity issue is a pain. When it gets too wet in the tubing, I hear rattling and stuff because of the water that is being pushed with each positive air blow. It has, however, completely changed my life.

Sorry to hear about that diagnosis. Keep on it, explore alternatives. It’s your body !

Cartooniverse

8

What a great idea! I hate being awakened by gurgling water from the condensation, and having to get up and shake the tube out.

I went on a weekend trip with a bunch of my friends and it scared the shit out of them when they woke up and came out to find me sleeping on the couch with my big old mask on :slight_smile:

ETA: Sorry about the diagnosis, too. What is up with all the autoimmune disorders nowadays? It seems nearly everyone, including me, has one…

9

I must point out that I was most amused when she called it a bed snorkel, and then said “You could go down for hours!”

She is a special snowflake, indeed. :smiley: