Still here
 

Hi Everyone,

I am Danny's wife. He reads the forum sometimes but it can be overwhelming. I'm on here quite a bit - reading, getting ideas & cheering you all on. I'm very glad he found this community for support since this disease can be so crazy. I'll probably do most posting since reading and typing can be tough for him at times.

Since he never updated after his surgery, here is the latest (abbreviated version): The surgery went well. They removed the thymoma - about the size of an egg & hyperplastic thymus gland. He had several rounds of PLEX in the hospital & came home in alot of pain but basically symptom free w/ Mestinon. About 5 mos after surgery (Feb '10) we started to see alot of progression. Ptosis was bad, double vision never got bad really bad again but now he has lots of blurriness - do any of you have that? Also, difficulty lifting arms above head, slurring/nasal speech, minor breathing trouble & generalized weakness. After discussions w/ neuro we decided on PLEX again & he just completed 4th of 5 treatments. Seeing some improvement, but not as much as we had hoped. Currently, only taking 60mg of Mestinon every 2 hours & ext release at night. Holding off on Pred & Imuran for now.

Hope you all are doing well ~ Alison

Sadly Alison- I know this all too well. My doctors never warned me that i could become worse better than I had become better. I wonder if they ever said that to you guys.

Im 17, maybe its different. Yet I had my thymectomy, and had a thymoma the size of a baseball which never even showed on a CT scan. Supposedly it grew in 2 months. Unsure of how that happened. Yet I was ordered to have 6 rounds of PLEX before my surgery because i wouldnt have made it through if not. (supposdely) So, i did, and after surgery I got collapsed lung and had an extended stay. Yet thats not the problem. I begin to develop worse symptoms about 3 months out, chewing and swallowing problems, along with hardly being able to walk, and went to the ER. Mind you this has happened about 5 times over a 4-6 month period. About once a month since november. I had my thymectomy in september.

Sorry it might seem very confusing. But I understand what you are going through, and how hard this is.

But ive just had to have my 32 plasmapheresis session a few weeks ago, and thats all the can seem to figure out. I would also hold off on pred and imuran. Im on pred and cellcept, and the sideaffects are HORRIBLE and nothing is working yet.

Hope your husband is faring well.

Hi Alison,

Thanks for letting us know how your hubby is doing...I was a bit worried when he didn't update after the surgery...

I also have similar problems to him and Tyson...Also had a thymoma, had surgery in July, and seemed to get worse after...More prominent tongue weakness and chronic nasal speech...Had to go back to the hospital a couple of times afterward, also got PLEX about 3-times since then...

I'm currently tapering off prednisone which was started after I had a bad relapse in sx after the surgery...

Btw, I also had a hyperplastic thymus along with the thymoma...This is unusual, apparently, and my neurologist says that it's promising in terms of ever having a drug-free remission...Do you happen to know what type of thymoma he had? Mine was an AB type....

Anyway, I'm very glad that you let us know how he's doing....I hope he gets better soon!

Nicky

Hey Allison,

Thank you so much for updating us on Danny's progress. I too became much worse after my thymectomy in 02. Not only my usual symptoms, but I developed new ones as well. My insurance wouldn't cover anymore plex and I opted to take only Mestinon and still do. The first year was pretty rough, but eventully little by little the sypmtoms lessened and I became stronger. It did take about 4 years to see the full benefits of the surgery and I'm very glad I had it done. I had one crises which put me in the ICU for 5 days, but I totally contribute it to the heat.

I wish Danny all the best and I'm sure he will come along at his own pace as well. I'm so sorry he is not doing well now. Sometimes the plex can take awhile to really kick in and I hope that's the case for him. Please keep us updated when you can and take good care of yourself too. I'll be keeping good thoughts.;)

Hugs,
Pat

Allison, Thanks for letting us know how he's doing. It sounds like his doctors know what they're doing and are taking great care of him. Surgery is pretty rough on the body and can exacerbate MG, as I'm sure you both know! So maybe he just needs some time to rest and heal.

Sometimes MGers need a reminder that MG gets worse upon exertion too! ;) Mestinon helps but it doesn't do anything for the immune process, even though a study or two have said that it does. And if your husband has any symptoms that are not MG-related, it's not out of the realm of possibilities for him to have another condition, like a thyroid problem for example, that could be making MG worse.

I hope Danny continues to get better. And do something nice for yourself too because being a "caregiver" is hard, stressful work. Even if you aren't actively being one.

Annie