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.

Here are the SS Disability statistics from 2006 -- state by state.
http://www.ultimatedisabilityguide.c...ial_rates.html

Oh man, Jana...That sounds horrible! Thank God you were approved, but it shoulda been done right away...I read that thing too...About the severe bulbar/motor weakness, and this is where I got my assurance that I wouldn't have trouble.

Mind you, I'm in Canada, and I also applied for this through my employer's insurance. I haven't applied for CPP (same thing as SSI sorta). My boss was completely behind me 100%.

Sorry you went through that! I was very stressed out while waiting for my approval too- being denied would have sent me over the edge, emotionally and MG-wise too- it's bad enough to have this, but then to have to worry about living in a cardboard box is too much (figuratively)....

Thanks, Nicky!:hug:

The BAD part -- IF I got SS, then I would get STATE disability, too -- because I was a teacher -- but, if I did NOT get SS, then NO State disability. So, I was really SQUIRMING. It was like I was going to be "comfortable" or in the "poor house". NOT a good feeling!!!

My medical records were in order -- I sent tons of stuff. I really think that the doc who got my case did NOT know anything about MG!! BUMMER!!

Ssi
 

Thanks for the replies. As I said, the company I work for has been wonderful. I do use a headset and mic but when my voice goes...it goes. I can type, as you can see, using a thumb and a finger, but its slow and not ideal in a job that judges on productivity. I've cut my hours down to the minimum allowed by the company so I'll talk to my Dr and look in to it...eventually. Im still hoping for a change...soon!

Nicky,
I do have trouble with writing, too and my handwriting is terrible now. Writing makes my hands so tired and I get cramps and stiff fingers. I am typing more and more because it is less tiring, but sometimes even then those last three digits give up. I love writing!

Jana,
Oh how terrible to go through all that...makes me have second thoughts about applying for SSI. I don't have what it takes to handle any more stress in my life, even though in the past I have loved these kinds of challenges... I will still give it a try.


About disability,
what is considered significant? Some days I can do repetitive things and be okay and others I can't. For example, last week I was feeling pretty good and had no big problems, I even did some things I can't usually do. These last few days, after any activity (even just walking short distances or bending over to pick something up) I have to take a break because the activity sends my heart racing and I start breathing fast. Who decides what is significant? Any suggestions on how to approach my doctor to let him know what I am going to do?

Okay, even thinking about possible future stress is making my heart pound and now it won't stop, and my arms, neck and legs are getting weak (I am laughing now and also sad and mad, because it seems so silly that I can get weak by thinking stressful things!!!). I seem to have some kind of stress induced MG since stress makes my symptoms get bad faster than physical activity. I hate MG. Time to go lay in bed for a while...I hate it when this happens.:mad:

Sorry for the complaints, I am having some bad days recently.

Thank you for the topic, I need to apply as soon as possible since my savings account won't last forever.

DF, I think I'm safe in saying that STRESS is one of our BIGGEST enemies!!

"Significant".........hmmmmmm. When I went to the speech therapist, she had me read ALOUD a paragraph without taking any breaks for my voice to rest. My voice tanked after about the tenth word -- dropping into a slur. After about the fifteenth word, you couldn't understand what I was saying. After the tweentieth word -- I couldn't move my lips. I was so shocked that I started crying and couldn't stop for about ten minutes. I knew that I was having speech "difficulties" -- but, until that test, I had no idea how bad they were.

Swallowing -- I have to "think" EACH and every time BEFORE I swallow ANYTHING -- a drink of water, a pill, a bite of food...........or I could choke. Sometimes, I STILL choke. You can get a swallowing study done, if needed. I believe a speech therapist can also observe this -- mine didn't need to -- she had all the info she needed AFTER hearing me speak.

Breathing -- have you been to a pulmo? Have you worn a Holter monitor to record your rapid heartbeats (I did) during a "normal" day.

There is a Social Security Forum in Neuro Talk -- you might want to check it out. There are a couple of people who "hang out" there who work for SS.

I applied for SSI in January 2006, was denied two times and appealed both times. I finally was approved in April 2009 after I went before a judge for the hearing. The hearing took about 10 minutes and I was approved. My attorney told me that it was the one of the quickest decision that he had been involved which basically means that I should have been approved the first time I filed. It also depends on the state you are in because in Ohio it takes at least 2 years to get a hearing with a judge. So most of my time was spent on waiting for the hearing. As I said before, I really should have been approved the first time I applied because my condition and treatment plan remained the same from the day I applied until the day of my hearing.

If you do apply and are denied, don't give up. Keep appealing. You may even get approved the first time as some people I have spoken with that have MG were approved when they first applied.

I was blessed in the fact that I had continued a disability insurance policy from a previous employer and they approved my disability when I filed with them so I was receiving monthly payments from them while I waited for my SSI to be approved. I kept thinking to myself if the company that held my private disability policy approved me right away then why in the world didn't Social Security???:confused:
Different guidlines I guess and also it is different when you are dealing with the Government.

Good luck in whatever you decide to do. :)

when applying
 

Describe your worst day when applying; not your good days. Also, describe in detail with specifics.

Wow, there seems to be quite a bit of difference between cases... Is disability (through an employer) harder to get typically then SSI. My work has been great thoughout my illness, and I pray to continue to work as it is the only think keeping me sane throughout this...