Ssi
 

Have any of you tried getting disability? My employer has been very patient with my illness but with the recent bout lasting two months+ now, Ive had to reduce my hours. I work for a company that allows me to work from home on my computer so the fact that my legs havent been working hasnt been an issue. However, three days ago the old hands went too. I can use one finger and my thumb on both hands just no speed ...and my speech (i do telemarketing) is now giving out too. So, Im being realistic. I may have to quit if I dont get better soon. Are any of you getting SSI? If so, how hard is it to do. Did you get denied alot or is MG kinda a no brainer? As it should be.

Hi Draggin',

I applied for long term disability through my employer and I was approved. I have similar areas of weakness as you, except my legs aren't really affected...I don't think that you'll have a problem...I think that you're right that with MG, it's sorta a 'no-brainer,' unless a person has the pure ocular type. Even then, I think that it's still possible as that weakness can be very severe and limiting too (especially if it doesn't respond to medication).

Good luck!
Nicky

I personally had no problem to recieve full dissability.

the hard thing was to find the way to keep on working using every possible tool and aid that I could find.

you may not know it, but even patients with ALS who are almost fully paralyzed can type on a computer. there are amazing technical tools that make it possible to do almost anything with very limited physical abilities.

even talking on the phone, can be made easier, by using a microphone or a head set so that you don't have to use your hands to hold it.

if you have an employer that is ready to be accomodative and help you find the way to keep on being gainfully employed, and doing some work from home, I personally would do my best to find the way to keep on doing it, even if only part time.

we all have our abilities and dissabilities and should just find the way to use our abilities despite the dissabilities. this is true for everyone, healthy or ill.

I just told my pulmonologist, a while ago, how hard it is for me not to be able to ask questions in a lecture (because I was one of those that always get up and ask), and he said to me, that it was hard for him too, because he is too embarssed to talk in front of a large croud.

so for him, it's his character, and for me it's my illness that is basically causing a similar dissability. and in a way mine is easier to overcome, because it is only a technical problem, and with proper accomodations and planning I was even able to give a short lecture myself.

alice

ssi
 

Draggin,
I applied for long term disability mid Jan. I haven't recieved an answer yet but like you am hoping and praying it is approved so I don't have to fight for it. Since Nicky and Alice didn't have any problems maybe we won't either. They did tell me it usually takes 90-120 days to receive an answer. Good luck!
Kendra

When I went on it 19 years ago I had no problem and got it right away. I have been off it for many years now but since I have come out of remission and can't work again, I was told I didn't have enough "credit hours" to get back on it.

I don't think you should have a problem, hint here, get a copy of your medical file and a note from your Dr and send it in with the application as that will speed up the process.

Disability
 

I applied for Social Security Disability even before I had a diagnosis of MG and received my first check exactly 5 months later. Good Luck. You have to be very explicit in saying and describing what you can and cannot do; for example: how many feet you can walk without becoming short of breath etc. I also applied on line.

It took me until the appearance before a judge to get it. Some states are tougher than others on "when" you get it. They are always on the lookout for people who are faking it. Stupid, I know. It helps to have the backing of your doctors. I'm sorry you are having to deal with this.

Annie

I have not tried for disability yet. I am still having a hard time accepting that I need to - I am very independant and proud to take care of myself and my family.

I keep hoping I can work more, but just can't work more than about 12 to 18 hrs a week without ending up in bed for a few days and sometimes for a week. This week I pushed myself and I think that I am going to pay for it during this upcoming week. I hate MG.

My savings account keeps dwindling so I need to do something.

My doctor said that my MG isn't bad enough to get disability...but then again he only sees me when I at my best and has never seen me when MG gets bad. How much does doctor opinion matter when applying for disability?

I can see that I will never get better, MG won't go away, so I need to do something. If I knew anyone in my/our situation, I would encourage them to apply for disablity knowing they deserved it. Why can't I see it that way for myself?

I am going to find the website and apply online. Let me know how it goes for you.

I can relate to your finger problems. Funny how my thumbs and index finger are rarely effected by MG but the rest of the finger are. Is it that way with you?

My voice is terrible too, I so much dread needing to make phone calls for my work and schedule phone calls during my best time of the day so people can understand me. Sometimes I don't answer the phone because I can't speak very well.

I hope you are feeling okay today.

[QUOTE=DesertFlower;629468]
I can relate to your finger problems. Funny how my thumbs and index finger are rarely effected by MG but the rest of the finger are. Is it that way with you?[QUOTE]

I totally relate to this, Desert....I think that it's weird too, that it's only the last three digits on each hand...Do you have trouble with using a pen/pencil too? My whole hand spasms, and goes limp if I write for too long. I find it easier to type.

I applied in the Fall of 2006 and it was a TOTAL nightmare. I COMPLETELY qualified according to the SSA website -- www.ssa.gov -- and was denied the first time. Here is what the website says about qualifications for MG:

11.12 Myasthenia gravis. With:

A. Significant difficulty with speaking, swallowing, or breathing while on prescribed therapy; or (ME!!!!!!!!!!!!!!!!)

B. Significant motor weakness of muscles of extremities on repetitive activity against resistance while on prescribed therapy.

The SS counselor who was assigned my case in Nashville was as confused about the denial as I was. He said that a SS doctor had been responsible for my rejection and that a different doctor would see my case on the second go round. I did research -- took NO chances -- contacted ALL of my legislators (state and national) AND got a lawyer with a GREAT % record. The legislators have a form that you fill out -- and SS is required to keep them apprised of your case status EVERY week. I also (on my OWN dime) took myself to a speech therapist and got a written report (cost about $110, I think). My lawyer expected -- actually WANTED to take me before a judge -- wanted the judge to HEAR my pathetic voice. But, I was approved within about 3 months of my second filing. HUGH sigh of relief!!

I do have to say that I recently found out that MY state has the highest denial rate IN the nation at the first and second levels.

Be prepared -- the stress was the WORST of my life -- my MG was the WORST it has EVER been during this period. I couldn't work -- could barely get out of bed -- had NO idea what the future would hold -- I was a mess -- mentally AND physically.