[Celeste M Matthews]

I ride my horse. It is more complicated than it used to be. First off, I can’t get on the horse without a mounting block. That means that when I ride off, I really need to stay on the horse. I have to call for help if I fall off. I also had to modify my saddle so that my stirrups hold still. I cannot go a long distance. I am able to enjoy riding through the woods and enjoying nature.

I am on mestinon. Anything else that I have taken have caused life threatening blood pressure spikes.

I telework. I am lazy a lot. But I do keep going.

Also add to my exercise list, shoveling manure. Grooming.

[Celeste M Matthews]

My neurologist gave me the opportunity to be involved in a genetics study. (It was not at her hospital.) The lab said that I had two different genes that are known to cause MG. The thing is, they are recessive. I only had one copy of each. So I should not have it.

My grandfather was diagnosed by an old country doctor with MS back in the 40’s. There were no good diagnostics. His signs were exactly the same as mine.

There is a genetic component according to the DNA guys. But I don’t think that they know as much about it as they think they do, because I should not have it. I have 2 different recessive genes. They feel certain that the genes are recessive. They are not on the same allele. So the two don’t match up.

Somebody said before, There is probably a genetic component.

If I can find that paper, I will tell everybody what the company is and what those genes are.

[Celeste M Matthews]

I had a total of 5 shots. The very first Pfizer that came out, 2 doses. Later when they said we need boosters, 2 doses. Of course spaced out like it was supposed to be. Then some time in October, I had the newfangled fancy “bivalent” Pfizer shot. No problems at all.

However, my 35 year old son, who is as healthy as a horse, had numerous vaccines. He had the bivalent shot a week after I did. It made him feel like crap.

And guess what? He caught Covid. He has been sick for 2 weeks. He is finally testing negative.

I am done with these Covid shots until somebody can explain why they don’t work.

I do get flu shots every year because I always get flu if I don’t.

[Celeste M Matthews]

I  have been diagnosed with seronegative MG. I have eye problems, voice problems, swallowing problems, overall muscle weakness, and really bad breathing problems. Nothing so far has helped me all that much. I still push myself to do things.

I am discouraged.

[Celeste M Matthews]

I  am seronegative. I have been through many doctors over the last 10 + years. I have had all the diagnostics imaginable. I have the wonky eyes, severe shortness of breath, when I am tired my ears stop up and then my soft palate drops and I cannot speak normally. I can walk. I cannot hike because I cannot go up hills. I have extreme weakness in my legs.

Neurologist 1 — It is all in your head

Neurologist 2 — Prescribed mestinon and cellcept. The cellcept made me gain 50 pounds and my blood pressure and blood sugar rose to dangerous levels.

Neurologist 3 — Changed me to immuran. My liver doubled in size and I started throwing abnormal liver values. I quit taking it. When I got to the next appointment, Neurologist 3 had skipped town to avoid some issue. Which led me to

Neurologist 4 — He found out that I had stopped taking the immune suppressant drugs. He wouldn’t get near me. He held his hands in a position to indicate that I should stay away. I don’t remember everything that he said. The main thing that I remember is him shouting “You will die! You will die!” That didn’t make my day. But I did get referred to

Neurologist 5 — She is at a major medical school hospital. She increased my mestinon. She also sent me for about a million tests. I go back soon. I think that IVIG is next on the plan.

The best thing I got out of her so far is that I was referred to an eyelid surgeon. She did a bunch of tests and agreed that I could not see out. She did a “Silicone Frontalis Lift”. What actually happened in surgery is that she attached a silicone thing to my eyelids. Then that thing was run up under my eyelid and pushed under the “frontalis” muscle which is the one that raises your eyebrows. She stitched the thing on each eyelid muscle to the underside of its frontalis muscle. I have actually learned how to use my eyebrow muscles to open my eyes without thinking about it. It was supposed to be done with a sedative and a local anesthetic, but I ended up totally knocked out. I think that I asked too many questions.

I looked like a prize fighter that lost badly after the surgery. Now, I can’t even see the scar on the eyelids. There is a funny bump above the eyelids. I cover it with bangs.

Note: in case somebody doesn’t know, gas anesthesia is considered really bad for MG patients. They often don’t start breathing on their own once the gas is off. I had 2 knee replacements using just an epidural and a low dose of propofol.  But that is a story for another day.

[Celeste M Matthews]

For a good while, I thought that I was having severe allergy reactions. My eyelids drooped so bad that I could not see. I had surgery to attach my eyelid to my frontalis muscle. It really helped.

Then my legs became week. I have double vision up close, but I can see at a distance. I have had so many neurologists. I am seronegative, but my current neurologist is convinced that MG is what I have.

The pandemic saved my job because we all started teleworking. I can be very successful at work if I am allowed to work from home.

MG sucks.

[Celeste M Matthews]

Both Imuran and Cellcept caused me all sorts of problems.

High blood pressure, High blood glucose, Extreme weight gain, water retention, and the best one, my liver doubled in size. Yes the doctors should have kept up with my liver enzymes. They did not. They did not do anything except for 3 month checkups. I went through 4 neurologists before 1 referred me to Major Teaching Hospital.

I am very happy with my neurologist. She does a very good exam and has done a lot of tests. I am being treated with mestinon alone.

Now, she is wanting me to go back on those same drugs that almost killed me. I am only getting exams every six months. My primary care physician sends off blood work occasionally.

I was doing ok until I had major surgery. Now I am weak and it sucks.

 

 

[Celeste M Matthews]

It really sucks.

[Celeste M Matthews]

I hope that you get in on that lawsuit.

I am in constant pain unless I lay around all day. Rather than opiates, I take gabapentin. It helps some. Not as much as I wish it would.

[Celeste M Matthews]

Hey Amy,

What do you think made your aunt sick before all the medication? I am seronegative, and I always have a feeling of doubt that the diagnosis is correct.

Celeste

[Celeste M Matthews]

The abbreviation “SOB” always brings other things to my mind than “short of breath”

[Celeste M Matthews]

“If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck. ”

Jane is correct.

You have MG. If you have a positive antibody test, it is a no brainer.

You have all the symptoms. You can’t have a false positive test. You can possibly have a positive test and not happen to be symptomatic. You can have a negative test and still have it. MG is diagnosed by the symptoms.

Time to trade neurologists. I went through 5 before I found someone who is an expert of neuromuscular junction disorders. She is at Emory University Hospital in Atlanta.

The small town docs didn’t cut it.