I fully agree with that. And I do hope that you will find the way to work and receive the support and understanding that you deserve.
Maybe you should consider consulting an occupational physician, if this is possible?
My occupational physician was of tremendous help in finding the way to work and also in helping my co-workers understand my abilities and disabilities. It is true that I was very fortunate to go back to work, in the same place in which everyone was ready to put the effort to help me in doing so. Still, I think his advice and support would have been of help anywhere.
There was even one time I called him when I felt I could no longer do it, as I was either given more work that I could handle or seen as someone who doesn't really count. He told me on the phone that he would have no problem recommending that I stop working, but he thinks my work is very important for me and that after all the efforts we have done it would make no sense to stop. So, he came over the next day, and we discussed how to solve this problem with the head of my dept. and all involved, and found innovative ways that overall worked quite well.

Please disregard that I currently may seem like "Miss Susie Sunshine" concerning my MG -- I AM on disability -- and am thankful EACH and EVERYDAY for my approval. My "attitude adjustment" came AFTER my acceptance -- I sweated BULLETS while I was waiting. Financial "insecurity" is a VERY, VERY scary thing -- I will never, EVER try to make light of this.

PLEASE, PLEASE...............do NOT feel guilty -- FILL out that appeal and get what is RIGHTFULLY yours!! I have NO doubt that any judge who sees you IN PERSON will immediately grant you approval. It is hard for the Soc Sec to "read" about our condition and really "understand" -- we've all talked about the CONFLICTING medical reports. An ADJ needs to see you in the FLESH!!

Have you been to the Soc Sec forum on this website? The folks there are AWESOME and can give you GREAT advice. PLEASE, PLEASE, PLEASE -- for your OWN SAKE -- don't give up!!

Thank you Jana and Alice for the support and ideas.

Thank you all for your thoughts. I value everyone's opinion and viewpoint on what happened. I have made an appointment with a social worker connected with the hospital and my neurologist for next week. I do think that having someone to talk to will be a good idea. I have a very close friend who was always there during my ordeal and she has provided invaluable advise and opinion to both my husband and me.

I haven't really talked to my husband too much about my feelings because he has been through so much himself and I know that he is going through his own hell. While I don't really remember alot of what happened during my 2 1/2 month hospital stay, he was there everyday fighting my battles and he saw almost everything that happened. Every now and then we'll get on the subject and he'll tell me something new that I don't remember. I'm not sure if he should find someone to talk to, he and my dear friend talked on a daily basis during my ordeal and he was able to release some of his frustration and she also helped in bouncing ideas back and forth with him about my condition.

She feels that it wouldn't hurt to talk to another neurologist just to have a "second option" about the course of treatment that I'm currently on with my doctor. I'm starting to think that may be a good idea also. Of course if a new doctor wants to change my meds, that will be the time that I'll have to make the decision on which doctor has the best path for me to take.

Since it's been almost two weeks since my last appointment and my doctor said he would have his assistant make my next appointment, I have not heard anything from them and she has always responded within days with a new appointment time. Again I'm wondering what is going on.

Thanks again for everyone's input. My best to all.

Southern Bell

I know that I've written about this before (I can't find it, or I'd link it....), but we all sometimes forget that what we experience when we are diagnosed is the equivalent of a "living death" - that is, what we thought was going to "be" isn't going to be.

We went through the same thing when our youngest daughter was born with Down syndrome. We had to go through all of the "stages" of grief, even though nobody had "technically" died. We realized that the child that we had been expecting "died" the minute that we heard those two words just a few hours after her birth - we were going to be raising a different baby than the one that we thought was going to arrive (you don't realize how much you take for granted until it "isn't" anymore).

It's much the same way with an MG diagnosis - the reality is that the disease will probably not kill you, but there are so many unknowns (much the same way as a DS diagnosis). And all you want to know is that things are going to be OK - I lost count of the times that I wished that I could see "where" our daughter was going to be 5, 10, 15, 20 years down the road. But, obviously, nobody can give you that - you just have to take each day as it comes, and you find yourself having good days and bad days.

It's OK to have a pity party whenever you need it (just keep things in perspective). It's OK to get mad at God and rail at Him and ask "Why Me?". It's OK to have moments/days of despair. As a matter of fact, if you DIDN'T have days like that, it would be worrisome!

The only thing that "helps" is TIME. Give yourself TIME to work through your grief about this diagnosis - and if you don't grieve, you won't be able to move on to the next step.

It's been 10 years since our daughter was born, and each time that I hear about a new family who has just received a DS diagnosis, I know exactly what they feel like. I also know that they will get through those difficult first few months, and come through on the "other side" smiling and laughing more than they ever thought possible.

I think that's what has made it easier for me to work through this MG diagnosis - I know that it's a process. And MG is MUCH different from DS - we're talking about a baffling disease that changes your life forever. I STILL have days when I just want to toss in the towel; I still wonder about the future and what it will hold.

But as time has gone on, I have learned to put things into perspective - in the 2 years since my initial diagnosis, our local DS support group has lost one of our moms to ALS and a couple to cancer. I've had friends who died unexpectedly. I've had friends who have had to deal with a family member with Alzheimer's or some other debilitating condition. So, yeah - when I compare my life to theirs, I think to myself, "Well, at least I'm not dealing with THAT....."

And then I look at all of my friends who are going on great vacations, or who are getting out and about and able to do things, and I think to myself, "I wish I could do those things", and I realize that I will probably never be able to do those things. And then I get really sad.

It's a process, and it takes time to work through.

That's what we're all here for, though - moral support and helping each other through those hard times. I don't know about you guys, but I find myself copying some peoples' comments and e-mailing them to my husband so that he can understand that I'm NOT the only one who is experiencing "this" - because sometimes somebody expresses what something feels like much better than I ever could.

So, b**** away, friends! The rest of us will pull up a chair, prop up our feet, and commiserate with ya.....

Teresa, WOW!! Girl, you are some kinda ELOQUENT! You can really put feelings into words! WHEW!! May I copy YOUR post and pass it out to family and friends?!?!?!?!

BIG (((HUGS)))

I have made an appointment with a social worker connected with the hospital and my neurologist for next week. I do think that having someone to talk to will be a good idea.

If I might make a suggestion - you might want to ask your neurologist (or an oncologist) for a referral to a professional who primarily works with people who are dealing with life-changing ILLNESSES, rather than a "run-of-the-mill" psychiatrist/psychologist/social worker. There are very unique things that are dealt with in that particular sub-group of patients, and you want to be sure that you are talking with someone who understands the unique needs of those patients.

Just my two cents' worth.....

Absolutely!
(And thanks....)

Jana, I look at it as if were all snowflakes....no two are alike...MG is different for us all. Although it is the same disease....What works for me may not work for you or others. This is a good way to explain it I think.....Were Snowflakes

Yep, I'm definitely "flakey" -- LOL!!! Welcome to the group, MK!!