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Peg B

Distinguished member
Nov 5, 2006

I have DX of "MMN or Atypical ALS." I was first DX with ALS in Oct 2006. Dec 2006 U of Michigan ALS clinic said possible MMN - not sure. I started IVIG in January 2007. Revisit April and continued on IVIG X2 a month. Finger is atrophied on dominate hand (R) but since treatment I can move it a bit to the right, but not to the left. Borderline conduction block at elbow. My EMG is abnormal at three limbs in Dec 06. I have trouble walking more than a block or so without a cane, trouble with stairs, and great dificulty writing - even a check. Stopped working November 2006 and retired March 1, 2007 (36.2 years in public education). I am receiving full retirement and Long Term Disability.

I applied for SSD and now need to see SSD Dr. to verify disability status with MNN. They are not asking about the ALS part even though I have stressed the TERI law with them. Any suggestions besides taking all my paper work? What are they looking for really? I am 58. My neurologists say we have to wait to see which symtoms really show up before we know for sure which DX is correct. Meanwhile I continue to get IVIG treatment. Thanks for any help. Peg
Hi Peg- sorry you are going through all this. There must be someplace online where we can get a full copy of that law-maybe there is language that applies to people with a clear DX of MND as well. If there isn't, I wonder if your Former Union (If you were a member of one) has an advocate that can go with you to apply? In our state, Massachusetts, there are lawyers wno specilalze in Social security disability but even though their fees vary they do cost. Maybe you can try it on your own first and then hire help.

Better yet, maybe somebody else on this forum will have some tips! Regards, Cindy
Hi Peg -

If you don't meet the criteria for presumptive eligibility, then you will need to show medical evidence that you cannot perform work related activities. SSA has a specific questionnaire that they send to the doctors about this. Getting docs to promptly complete and return this paperwork helps the process along. Also, in some regions SSA is severely backlogged. I've seen people wait up to two years for a determination. It is common for the first determination to be a denial but you must appeal this to keep your original application date which makes a difference as to how much retroactive benefits will be paid out to you once your application is approved . There are lawyers who specialize in helping with this process - they are very helpful in pushing cases to resolution and will take a cut of your retro pay as payment.

Good luck,

Thanks Liz and Cindy,

I will get a lawyer if I am turned down. I have turned in all of the paper work and turned it in in person. Because I do not have a "for sure" diagnosis, I have this additional step of having to see their doctor who is an internist. I am in good shape compared to a lot of people but I cannot write which is big part of my job. I fell a lot over the past 4 years. etc. etc. I do not know anyone who has had to go to a SSD doctor to "prove" their disability. And I am lucky since I am still not turned down, but since I am on Long Term Disability, I have to apply for SSD. I guess in part I hate the idea of having to "prove" myself as if I am trying to get away with something. I appreciate any information, so thanks again. Also I do not believe they are being advisorial but cautious. I hope I am right. Thanks, Peg
Your biggest problem might be the internist, as often they do not understand MND's and might not know what to look for. But you can always challenge it and you can always bring in help so I am sure things will work out in the long run. Good luck! When did you say yur appointment is? Cindy
Thanks Cindy,

My appointment is this Thursday. I am surprised that with all the posts regarding DX that no one has had to go before a SSD doctor to show how they disabled. It must really be an unusual situation. Thanks again for replies. Peg
I do hope the disability benefits are sorted out .It shouldn't depend on what the diagnosis is, but on the disability.
On the matter of MMN( multi focal motor neuropathy), just to say that it isn't a motor neuron disease, but an immune mediated neuropathy. Hence the treatment. So it is not an ALS variant. On the other hand, it can sometimes be difficult to get the diagnosis right and of course the alternative diagnosis is MND. I hope Peg, that you have MMN, as it is slow in progression and treatable to an extent, but obviously nothing is completely clear cut at the moment.
Good luck with both the diagnosis and the benefit.
Best wishes
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