I had lots of documentation and records for my disability company (Unum). I also provided them with my blog and videos. I think that helped prove time-wise what was happening to me. I was approved within the 90 day exclusion period.

Unum also has files for Social Security for me in April. Still waiting and waiting.

Unum is private vs Social Security. It will be interesting to see what happens with them.

Kerry

For social security, the disability has to be expected to last at least one year. Disability is defined pretty narrowly-- expected not to be able to be gainfully employed in any occupation for which you are qualified and to be disabled from engaging in activities of daily living. Some diagnoses are almost automatically allowed because those with that diagnosis are predictably severely ill or expected to die without being able to return to work But since myasthenia is variable in how it acts and is treatable, it is more difficult to meet the criteria and therefore the decisions take a longer time while information is being gathered and reviewed. Some people who are denied appeal
the decision to a judge who is often more lenient.
b.

I think bweeds has stated the case eloquently and accurately. I'm chiming in because the whole notion of disability for MG has always rankled me a bit. Thankfully, we don't suffer from a progressive and degenerative disease like MS or ALS. Regardless of how bad off you are right now, you WILL get better and return to some modicum of decent health, if your doctor treats the disease aggressively, as well they should.

An MG patient may find themselves permanently limited from performing hard manual labor but not from less physically demanding jobs. If it is the case that the MG sufferer is a steelworker or bricklayer, for example, they may need to find a different line of work

(Full) Disability, rightly, should go to the truly disabled...and that doesn't include us.

Curt

I have to respectfully disagree Curt, there are some patients with MG who are not functional enough at all to work. Their muscles can barely get them out of bed. In one of the handbook for disalblity they show a list of diseases that automatically qualify for disablity and MG is one of them. Know I am not sure if we are all talking about SSA and SSI or disablity from work. If is is from work I don't know the rules for that.

It's true, Adamrach, that many with MG will experience and acute phase of the disease and be unable to work for a short period. This will usually last only weeks or months, not for the rest of the sufferer's working life. That indeed would be an extremely rare situation.

A review of the epidemiology of the disease shows clearly that, with proper treatment, people with MG will resume a fairly normal life. This was not the case 30, 40 or 50 years ago, however, when most sufferers endured dramatic and debilitating symptoms, causing total disability.

If an MG patient is not finding relief from an acute and debilitating phase of the disease, they need to find another physician fast as this needn't be the case. Unfortunately, most docs are too conservative with drug therapies for MG and people suffer needlessly. I found myself in that situation so I know.

At the onset of this disease, I determined not to let it get the best of me. I suffered horribly and nearly died from the symptoms on a couple of occasions. I went into respiratory distress and was in a coma for a week three years ago. I was pegged as being in the worst decile, statistically, WRT my level of symptoms of MG (couldn't walk, pick up a bag of sugar, couldn't talk or eat or dress myself). I fought to get the drugs I needed and the treatments necessary to pull me out of the pits...and they did.

Only a very tiny percentage of the population with MG (less than 5 percent) will have symptoms that are so refractory as to be untreatable. While I don't forget about this group, they are a tiny - but not forgotten - portion of our population. The rest of us will get better. Believe it!!!

Curt

Well I would like to believe it because I have gone from working a 40-50 hour job a week to not being able to work at all. Best wishes for us all to find joy and happiness in this rough disease.

I have to agree with Rachel. Many of us MG sufferers have significant eye involvement and if you cannot see much more than blurry outlines at times, twice as many letters as there should be at others, or hazy shades how can one work? Some have nystagmus, double vision, blurry vision, ptosis, along with moderate to severe general muscle weakness. Holding ones' head up with one hand, closing one eye trying to focus with the other, and typing one handed...I cannot see how this is the ideal candidate for any employer to pay and this is where disability comes in. An employer does not wish to pay an employee for eight hours of work when said employee is only able to give four hours due to their disability.
As far as treating aggressively, we know MG is not a one sized fit all disease and while Curt may have responded well to some aggressive treatment, there are others of us who are still seeking that "decent health" you speak of. I am not the worst MG sufferer out there, there are many who are far worse than me and for that I feel sad for them and their families. I am taking Mestinon, Prednisone, Imuran, IVIG every month and have recently developed blood clots most probably due to the IVIG which added another everyday medicine to my sorter...Warfarin, at 32 years old. I also take meds to help me sleep when the prednisone keeps me up all night, and zofran for when I want to vomit all day.
I do feel there are many who receive disability who are no more disabled than my children running around playing right now, yet there are others who indeed need and should receive it and this does include persons who have MG who have not been able to find that healthy place again.

It WILL happen for you, Adamrach, believe it! Typically, we will go through a couple of rough years and have a few acute episodes during those years. With lots of prednisone and CellCept, some IVIG and PLEX, we come out of the grips of the harshest symptoms. We may suffer other ailments along the way, exacerbated by prenisone - I sure did - but it all becomes a blurred memory in time. The disease may also come back, full-force, years down the road, but by that time, we know how to handle it.

Most important, take responsibility for your own treatment. Insist on aggressive therapy. If you're suffering, reach out! I remember when I started PLEX, I told the nurse I hadn't been able to swallow for six months. She told me I should have had PLEX when the problem started. But my doc had held back, hoping 30mg of prednisone would do the trick. When all was said and done, I had 17 courses of PLEX, one of IVIG and lots of prednisone. You really need to "shock" this disease into behaving.

But, we are not permanently disabled, unless, of course, we believe we are.

I do most of the things I did pre-MG. I used to be able to walk 15-20 miles in a day. I can't do that anymore. It may be age as well as MG, however. For the same reasons of fatigue, I can't ride my bike long distances (say 25-100 miles), so I ride motorcycles instead.

You've got to want to be well. Never use the word "sick" with MG. Unless you are nauseated, you are not sick. Believe in your ability to get out of where you're at and stick by it!

Curt

Droopy - I understand. I've been right where you are right now, and I'm telling you "this, too, shall pass."

Please don't misunderstand my statement on disability. There may indeed be qualifications for short-term state disability which operates the same as unemployment insurance where you will receive a payment only for as long as you suffer from the disability. This is vastly different from SSI, which is reserved for permanently disabled people. MG won't make us qualify as permanently disabled, nor should it.

Yes, we all respond differently to meds. Give time time. I see that most of the folks discussing this topic have been in the group for only a few months. Unfortunately, this disease plays out over years.

Just keep believing you will be well, and you will be well.

Curt

Thanks Curt, I have had MG for 22 years, it seems a lifetime. But I am learning to be postive I have been on prednisone for 20 years, and it has helped me I have really done good all these years till recently and then have had a slide downward, not sure why. Trying to stay postive.

Okay a question for all of you. Im new to MG...well let me rephrase...i've just finally got my diagnosis. I have double vision, drooping eyelid on the right...well pretty much my right side is worse than left overall. My problem is prior to my period I suffer horribly, I cannot get out of bed, i cannot open my eye make words my face is yuck i have trouble walking and writing my name. I went into respitory distress and thought i was going to die! I was out of work for 3 days and worked the final two with no relief in my symptoms I just chose to come to work i didnt want to use my vacation time due to this illness. the doctors said MG is affecting my soft tissue and that is also not common but not uncommon especially being being an asthmatic. My new pulmonary funcation is 86% of my basline which is not bad for day to day living but I dont think i will survive pms much longer. I already increased the mestinon per orders, but what happens each month now? I dont know what options are out there that will let me miss a few days of work each month without loosing money and valuable vacation time. Im a paralegal so its not like i have a physical job....any help from anyone please.

Oh i forgot i was in the hospital with the breathing issues. Not at home feeling sorry for myself. And sorry about the typos.. going fast lol

I use to have a lot of trouble during that time of month also. I got on the deprovera shot which stopped my periods and I have to say it has improved my MG symptoms. You should look into it I think it would really help, it really helped me, I know exactly what your saying about how you feel symptom wise before hand.

I'M 42 AND HAD MG FOR 4 YEAR AND WORKED LONG AS I COULD.DRIVING WITH ONE EYE , WEAK AND TRIED IS NO FUN . IN 2010 I HAD A BAD SET BACK AND NEVER COULD SHAKE IT OFF. I NEVER RETURN TO WORK . MY JOB LET ME GOOD . NOW I'M ON LTD WAITIN FOR SSA .IN JUNE I WENT INTO MG CRISIS AND NEARLY DIE . ONE OF MY DOCTOR PUSH ME ASIDE BECAUSE OF MONEY BUT GOD SENT ME A SAVE MAN AND TOOK ME IN.

drakeford -

What drugs are you taking for mg and how much of each?

Curt