slow down and take it easy, worrying will not help you only make you worry more
after 2 years ( age 71 right now) i had plenty of plans at retirement. Most of them are on hold, probably indefinitely. I am on about 20 different drugs and have had several procedures.
Doctors wanted me to have a thymectomy but after research and talking to a surgeon i decided not to go that route. When the surgeon said i would spend a week in post-op at the hospital to be monitored for internal bleeding and drainage (will have several drainage tubes in me).
I did not need the potential depression that would probably bring on.
Have also had catheter for heart blood vessel blockage (only 30% blockage) and 4 procedures to close my lower leg veins that on US showed my valves were leaking. The heart catheter and vein closure procedures were a piece of cake. Not sure if related to MG but these are things that can happen.
Started Vyvgard infusions early last year (infusions at home) with very little improvement. Started Ultramaris infusions late last year at neuro office. Will start Soliris in July for 8 weeks straight then go to every two weeks in August at Neuro infusion center.
Note: I wish doctors would stop asking 'How do you feel after taking medicine for a while'. How do I feel compared to what? Before I had MG or?
The other medications caused major cataracts (went from minimal to grade 4 in less than six months) Eye surgeon told me which medication was responsible for this but i forgot. Also have had several thousand dollars worth of dental work done because another medicine increased rapid loss of tooth enamel. No one told me that and was not mentioned in the drug brochure you get at pharmacist. So ask questions about your medications.
Thank you. The Neurologist has been giving both ortho and neuro strength tests on every visit. I do the infusions at his infusion center (located in his office). The infusions usually take about an hour and a half. Have had vyvgard and ultramaris with no positive results. I will be starting Soloris on July 1st and will see how that works. Very happy with my neuro and his entire staff including the infusion dept. Comes with a lot of experience with MG. His name is Dr. Schneider in Clearwater, FL. I have gone thru 3 neuros and he seems to be the best fit for me.
Already replaced both cataracts with new lens and they work great. Eye surgeon was Dr. John Michaelos in Largo, FL. The vascular doctor was Dr. Zouga. It is his side business, he is a heart surgeon. Very lucky to get him. Both the cataract and vein surgeries were very simple and easy to tolerate. Both surgeries took longer to get prepared for the surgeries than the actual surgeries themselves took. Neither surgery took longer than 10 minutes to complete.
My pulmonologist and cardiac doctors are very good. The catheter procedure to check blockage of my heart arteries was by Dr. Fernandez. No pain or discomfort
for procedure. He is also located in Clearwater. They gave me a stress test (using chemical not treadmill) because of my age. Doctor said no evidence of stress. When
he said that i told him "you want to see stress bring my wife in here, I'll show stress.
He actually laughed and the nurse assistant (looked like she was 10 yoa) had to turn
away from me she was so embarrassed.
Doctors are now telling me i have other unrelated issues going on. They seem to think trauma might have initiated all of this. I had a tree branch fall on me two years ago. Heard it break and had no time to move (was a clean break) I put my right arm up just to deflect it (and i did) but the backside of the branch swing around and hit me in the back of shoulder. Moved the humeris bone head about 4 inches down my chest. Had major dislocated right shoulder. Had surgery on that two years ago. Doctors are alluding to major trauma can set off other major problems/issues in the body. I will buy that for now. Doesn't really matter what caused the MG it is how i deal with it now.
I am not letting the MG get to me mentally. I am 'nursing' it for all I can. The wife is literally watching everything i do, she goes to appointments with me and drives me everywhere. She even gets me ice cream and/or milkshakes when she comes home late. I have too much time on my hands now. I can no longer work on yard since directly sunlight seems to drain the energy out of me. I can actually feel it leaving.
I go out very early and do a little work in the yard at a time. also have a lot of time to read and watch You Tube, started doing Hydroponics last year and You Tube has been a lot of help once you weed thru the people that do not know what they are talking about.
Best of luck to everyone and hold on to your sanity. Slowing down in life is much
more difficult than it seems.Hi Ernie. That's quite a story. I think you're running out of medicines to try. Ha ha. I hope the Solaris works for you. Keep your head up. I'm 77 and have the same heart problems, but I'm still on the green side of the grass and feeling pretty good. When you land on a medicine regimen that works, it should stabilize your symptoms. Your doctor visits (to a neurologist) should include a standard set of tests that tell the doctor how you are doing. He should be assessing eye mobility, grip strength, leg strength, etc. And assigning numerical scores.
Prednisone is the med that causes cataracts. But it can be caused by too many birthdays, too. Don't be afraid to get cataract surgery. It's very easy outpatient procedures and should have no impact on your MG.
Unless a CT scan showed a tumor in your thymus, I think you are really wise to skip the thymectomy. Removing a healthy thymus at your age is too risky, especially if your symptoms are uncontrolled. There is a growing consensus in the medical community that thymectomies improve symptoms for everyone, regardless of age, but I am skeptical because measuring "improvement" is so subjective. If the surgery was so beneficial, it should show up in death-from-all-causes statistics. MG patients who have had thymectomies should be outliving those who have not. But the reverse is true. Like you, my doctor and I agreed to skip the surgery.
Now it's time for you to get happy. There is no cure for MG and you are never going to be free from of all symptoms. Be grateful you're still fighting the good fight. When you finally decide that, hey, this is good enough. I can live with this. Then you free yourself to reassess what you can STILL DO, set new, realistic goals and set about enjoying life again.
David
