[tnalawson]

Did ur thymectomy work story please!!

My husband has Class III Generalized Myasthenia, between weakness, occassional wheezing and shortness of breath, spells with swallowing and all over weakness, double and blurried vision.
He has CHRONIC PAIN and has spinal stenosis, spondylosis, AUTOIMMUNE Small Fiber Neuropathy, Peripheral Neuropathy, Hypertension, Low Testorone, Vit D and testerone, H=Pylori, and Fibromyalgia

They want 2 do IVIG for Neuropathy, but a thymectomy for MG and he doesnt have anything abnormal with thymus gland. Has this helped u.

He had positive blood and Repeatitive EMG for MG. We are doing Pumonary and Barien swallow next week, he has had a crisis in March, he has chronic flu like pain and is on roxicodone, fentenyal, gabapentin, mesotin, and more moremore!!

[AnnieB3]

I'm wondering, have you spoken with his doctors about all those drugs? What about the Neurontin/Gabapentin? Like I said, it can make MG worse. So will pain meds like Fentanyl or combining pain meds like they are doing to him.

Is he taking sublingual B12 (methylcobalamin) yet? It will help greatly with the pain.

Considering how bad he was just doing, a thymectomy right now might put him right back into a crisis. You don't want surgery when MG is not stable!!! The risk is too great. I understand wanting that magic bullet that will make him better but he needs to stabilize. What has his doctors said about this?

It's going to take a while for his small intestines to heal from the celiac. Is he off all gluten (wheat, barley, rye and oats)?

Chronic flu-like pain could be from the vitamin D deficiency. Are they addressing that?

There is no quick fix here but there are simple things you can be doing, as I mentioned above.

And if they have not checked his thyroid, they need to. And possibly his cortisol levels.

I hope he will continue to get better.

Annie

[teresakoch]

Just a quick note about gluten - if you aren't already aware, you would be AMAZED at how many seemingly "safe" things have gluten in them. Even things as benign as shampoos and lotions can have trace amounts in them, believe it or not. Most medications are gluten-free, but you may want to double-check, just to be sure.

[tnalawson]

Originally Posted by teresakoch

Just a quick note about gluten - if you aren't already aware, you would be AMAZED at how many seemingly "safe" things have gluten in them. Even things as benign as shampoos and lotions can have trace amounts in them, believe it or not. Most medications are gluten-free, but you may want to double-check, just to be sure.

Yes he is off Gluten, not addressing pain meds and gab, it helps the neuropathy and keeps him from spasms.
Vit. d, he is taking supplements.

Has anyone had the thymectomy, is it more effective in occular ??

[KathyV]

I had thymectomy last December. Mine was necessary because I had a thymoma.

My MG started out as ocular in July '09. Experienced more generalized weakness and minor crisis in November '09. Had 4 plasma exchanges prior to surgery in December '09. My thymoma was Stage IIa and I had to have 25 radiation treatments. My ocular symptoms were the last to go away after surgery. I tapered off Prednisone in April '10. I have been just on Mestinon since April. Recently I've noticed mild ptosis has returned to my right eye. Don't know if it's due to the summer heat or what? Just hope the double vision doesn't return.

With all the other issues your husband is dealing with, I'd definitely weigh your decision carefully regarding the thymectomy especially since there is no abnormality with his thymus.

Hope your husband gets some relief soon.

[Juanitad]

Had my thymectomy in 2005 - my CT scan showed no abnormality either, but lab tests showed Stage II malignant tumor in thymus - had to have 28 radiation treatments.

DV better until about a year ago - have had to wear a patch for the last 10-12 months. Get IVIG every 1-2 weeks, depending on how I feel

I agree with the other posters, he needs to be as stable as possible before surgery because it is a major surgery.

Good luck with your decision!