I'm almost all healed up, a little itchy but barley any pain at all anymore! Just when I mop my floors

I saw my internalist yesterday and we decided to keep me on 60mg of Mestinon and IVIG every 28 days, my double vision is back andi have been very weak in my legs and arms since I should have had my IVIG at least a week ago and it always gives me that boost I need.

I got a copy of the letter my neurologist sent to my internalist and he said "that is in a month if I was feeling better I could try and wean myself of my Mestinon, but if I was doing good we would have to start treatment again"

I'm a month post op and wouldn't dream of talking my self of my med's, don't get me wrong I would do the surgery all over again, but I think we should give it more time to see if it has helped at all.

I also see my surgon on June 12 and he will do some tests to make sure he even got all the thymus gland out, then in the middle of August they want to re-check my antibody levels and see where they are at.

I am being treated by the best medical doctor we have in my town, in her 40 year career I am only her third case of MG she has ever encountered, so it's a bit of tril by error, is there any way to know by the antibodies if the Thymectomy has worked? Or any other tests we can do? Or is it just a wait and see?

I have been having a New symptom of memory problem, anyone else have this or is it just that I have sooooo much going on???

I guess with my symptoyms back so bad it could be the weather, this is my first summer with MG

Hope everyone is doing good
Thanks for listening

Glad you are doing better!

I think you are right about summer - - it can make it more challenging for MG'ers. I have never heard of a direct relationship between antibody level reduction and thymectomy. I'm of the opinion, though, that it doesn't correlate.

Most everything with MG is wait and see...just be sure to listen to your body when it tells you stuff (specifically like 'I'm tired'!!). People who are prone to be task oriented (just let me get this one thing done and then I'll take a break) can sometimes push themselves too far. MG has a way of paying us back for that!!

The memory thing....remember that your body has been through a lot and even though your feeling better, it has still endured a lot of stress. But it may be worth mentioning it at your doc's apt to get his(her) take.

did you have the sternum splitting option? looks like I'm heading for that. how long after till you could get up and about? trying to figure out how long ill be out of work (i just work at a computer so nothing physical.) hope you are feeling better symptom-wise soon!

I had the VATS Thymectomy, I got 5 small incisions and 1 a little larger where the thymus came out of and where my chest tube was. They originally wanted to split my sternum but I pushed for the VATS since I have two small kids we couldn't afford for me to be down for so long.

Good luck it's a very big decision.

You have a thymoma... right? Or am I thinking of another new person who posted here recently?

Nope! Must be someone else, I have graves disease and MG

i have a thymoma, which is why i don't think the VATS is an option for me. sorry, not trying to take over this thread. glad you are up (and even able to mop the floors kimmy!)

Sorry I just got re-reading, and no i don't have thymoma that I know of, as far as the CT went my thymus was enlarged, but I haven't got the results of the pathology repot yet, I will know more on June 12 when i see the surgon again.




QUOTE=kimmyF;886913]Nope! Must be someone else, I have graves disease and MG[/QUOTE]

I am 6 months post transsternal thymectomy. My only MG symptom pre-surgery was ptosis, about 4 weeks post surgery the ptosis mostly went away. I stopped the Mestinon about 4 months after surgery and haven't had the ptosis return yet. (Thank God) However, all of my antibody tests in January, March and May are off the charts high, high enough that my neuroligist contacted an MG guru at Duke University. That guru said that he'd seen high levels after thymectomy and didn't find a correlation to the severity of the disease and they might or might not go down eventually.

My thymus was 9cm by 9cm, twice as big as CT scan showed it to be. No thymoma.

Yes - I have noticed memory problems - I'm attributing it to recovering from major surgery.


My badge of courage ( scar) isn't too bad, however, 2 of the wires are trying to escape and are kind of scary looking. (looks like 2 huge pimples) Can't have them removed till one year has passed, which is ok because I'm not wanting to be sedated right now since my MG symptoms are quiet.

Jamh1 - plan on being out of work 8 weeks - give or take 2 weeks.

My wires are still in. Not worth going back under to have them removed in my opinion.