I have been out of work since I had my son in July 09. I tried when my maternity leave was over, to go back to my job in OCT 09...unsuccessfully. My job was awesome, I worked from home on the computer, I only had to go into the office once a week for a few hours, and made wasy great money. But the stress knocked me out..by my second day back, I couldn't see or type. It was terrible, so I filed for Soc. Security. I was initially denied, with them staing that I would be recovered by Oct 10. I filed for appeal in Feb '10, but the office I was assigned to, is part of a pilot program, so I was immediately appealing by ALJ hearing. So here we are almost a year later, and I finally got my hearing date! April 12 2011!!! I'm so nervous, but I'm so excited to finally be moving onto the next step. I really need them approve it soon because my Cobra insurance is running out of time...Does anybody have experience with this process?

Also recently I have been having a particularly bad flare of my MG. I've never been stable, or strong, but compared to the best period I had since getting sick, this is like going backwards 80%. My husband did a little research, and we discovered that the Nuerontin I've been taking for the last 2 months, has had serious adverse effects on MGers...It seems around 2-3 months into the rx, is when it starts acting up. My MG started getting really severe about 2 weeks ago, to the point the other day, I couldn't pluck my eybrows even tho my arm was resting on the couch. My hand didnt want to hold the tweezers, and my lower arm wouldnt stay up. My hubby called the pain Dr, who didnt believe the study we found held any merit,(it was from some Gov. website) but agreed I should stop taking it, especially since it's not helping the pain. He did tell us that he might want to try me on Cymbalta instead, but wont prescribe anything until I go in for an appt. I live 8 hours away and try to make it back to see all my dr's every other month, but wont be going back for at least two more months.. I moved here about 5 months ago for my husbands job, but until I know we will be here permanently, I love my Drs, and would rather drive to visit and schedule my appts when we can make it, than find sub-par drs who don't know my disease, just to have them closer. Sux that my pain dr seems to be more interested in collecting the fee for my appt than actually helping me. Hopefully I'll get it all sorted out soon!

Jessica

Jessica, I have been thru the soc sec app process. Not as messy as yours tho so I am lucky. My doc was extremely good at getting this kinda thing done. I think the right doc helps.

I personally cant imagine that neurotnin is at all helpful for you over strength and day to day abilty. My son in laws personality changed so much on it it nearlly ended their marriage. He would go into these rages. Your doc sounds anti narcotic which I respect but as my doc says while lortab is narcotic it is when managed well and respectfully the safest drug for pain. If not for it I would not bet much sleep many nites. My neck is so weak it is in pain nearly everyday.

I lost my job because of the MG crisis in july 08. They didnt seem to get that I wasnt strong enough to bath, dress and all that would get me to work 4 days a week. Also my breathing would have lasted thru all the phone calls. It was a holiday and no one really evalutated my strength before I went home. Me being me drove home acutally trying to stop at the store for soda. I fell into a display on the way out.

Annie59

Hi Jessica,
I'm glad that you finally have a date set for your SSDI hearing. I understand how hard it is to wait for that day to come. I waited three years for my hearing. Funny thing is that I waited three years for my hearing and I was approved in about 20 minutes. My attorney told me that the decision on my case was the quickest one that he has ever had in his 25 years as a Disibility Attorney.

I tried working many years with MG but I also went from working full-time to part-time to working at home. I could not maintain continuity of employment in any capacity due to MG relapses and hospital stays. That was the main condition I met for approval of SSDI. The treatment plan I am under is another condition I met... Mestinon, Immunosuppresants, and IVIG infusions. It also helped that I have an excellent Neurologist who kept accurate and detailed records on my MG condition and treatment plan.

I was nervous about my hearing also but I put it all in God's hands and everything worked out for me. I would advise you to be honest and answer questions asked according to how you feel on your worst days. I didn't have to say much because they already had reviewed my case before my hearing and it was clearly documented. Hopefully it will be the same for you

Private message me if you want to. I am willing to answer any questions that you may have.

You are in my thoughts and prayers,
Shari

Jessica, What kind of pain are you having? I have posted a lot about Neurontin. I hate when doctors pooh-pooh medical info. It has been shown to CAUSE MG as well, not only make it worse. That's great your husband figured that out.

Have you been checked for the obvious sources of pain such as B12, vitamin D, electrolytes, etc.? Finding the cause of pain is absolutely important. If you take pain meds without doing that, then the pain will continue even if you can't "feel" it.

They make patients often wait for the third round in front of a judge in order to get social security. I had to wait for that too. This is going to sound lame but, unfortunately, how you look has an impact on judges too. Dress simply, but still look "pretty." How sexist is that? A basic top in a pretty and passive color like blues or greens or periwinkle, for example, will help. Not red, don't wear red. This sounds very silly but how you present yourself is important. Just wear pants. People who don't feel well don't put on a dress. I hate that I'm writing all this but these kinds of "perception" issues play a role. I worked in PR/communications/marketing for years, so I know personally the impact of presentation.

You have to show the judge how bad you are. I didn't take Mestinon that day and I was really bad. I literally had to hold my head up with my arm after about 20 minutes. I slouched a lot too. And those chairs in a courtroom are really uncomfortable. I let my emotions show too but in a nonverbal, subtle way. I think I just looked "tired" the entire time. I could feel my entire face drooping. The judge asked me many questions. I did tear up at one point, when I talked about not be able to work. Then he talked about depression and I almost lost it. Can you imagine having to talk about such personal things in front of a judge? Get ready for that because it's not as easy as it sounds.

Only answer questions you are asked unless you feel making a point is necessary. Speaking as little as possible is good. Be polite. Say "Yes, your Honor" or "No, your Honor." You don't have to say "Your Honor" after everything but they do want to know you respect them . . . just like doctors do. This may sound like very simplistic stuff but the lawyer who represented me told me how often people lose cases due to very simple and basic things like this. Sad but true.

It's important to have someone there with you. 1) to drive and 2) to show you are supported. You'll be amazed how tiring these hearings are. I could hardly get up out of my chair afterwards. Prepare for a nap!

The judge I had declared in court that I was approved, which is not often done. While I was relieved, due to the two plus years without money, I was also completely overwhelmed because it meant I was officially disabled. Nothing can quite prepare you for that moment.

I hope the hearing goes well. No one likes to have SSDI but those of us who need it, need it. I'd give almost anything to be able to work again. Sorry you can't either.

Annie

Thank guys!

Annie59- My doc isn't anti narcotic, I think he just has a protocall...He just put me on fentanyl patches, so hopefully they will help...

Shari- Thankfully my I just saw my nurologist, and she had the paperwork from the attorney in hand. She did a few tests on me and said she would make sure this was the last time I had to worry about my social security stuff. She said I am obviously disabled and the added stress is horrible for me. I alos have had the thymectomy, on pred, Imuran, and IVIG monthly, and still declining...

Annie- I totally agree with your advice to let them see me at my worst. Our disease is so fickle, I could be able to run at my court date and not able to breath an hour later even with all my meds. I will not be taking some of them the morning of my court date. My husband will take me, as I don't really drive anyway, and we may even have to use my wheelchair...I'll only use it if I really need it tho, because I don't want them to think I'm faking. I have had all my vit levels tested, and everything is normal. My nuero thinks I may be getting a little myotonia, so that may be causing the pain. I'm sure I'll cry too, I always cry at my nuros when I have to show them how weak I am and let everyone see me like that.

My husband and I reviewed the cd that social security sent us with all the medical records they had on file, and the letter from the dr that denied me was in there as well as his explanation to the person in charge as to why he decided to deny me. His reasoning is, from my thymectomy and my records from my neuro, it seemed that I was improving, and if he took into account the half life of the bad anti bodies, I would be able to work by last Oct. I don't think he understood that some people with severe MG can improve, and still be very bad off...In the begining of my diagnosis and treatment plan with my nuero, they were very conservative with telling me what I could expect. They didn't want to disuade me from thinking I might get better. But now after all the treatments and stuff and time it's been since my surgery, they finally admitted, I'll be pretty bad off forever unless I miraculously go into remission. It sux to hear, but I've already come to terms with my new life, so it's nice to know they are on my team and believe me when I tell them how weak I am. At least I know it's not all in my head. I just want it to be over with already, I need the insurance, and I really need te money. I can't take care of my kids by myself, and my husband can only make so much money, without leaving me home alone 16 hours a day. Thank you all for your support!

Jess

The drugs you are on could cause pain too. Do you take flax or fish oil? Pred is an antiprostaglandin, which means it gets rid of both the good and bad prostaglandins which are important for many bodily functions, especially things like inflammation (pain).

Defining what type of pain is important too, which a neuro would be best at, not necessarily a pain doc.

Annie