SSDI Denial

General General CMT Discussion
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Well, after the responses to my Money Matters topic, I decided to go ahead and apply for SSDI. It was a two month process. They kept asking for bits and pieces of info (every week or so I'd get a request for something - often info I had already provided in the online application) and they asked me for medical records release forms twice (even though I had already filled out the form online). My issue is mainly fatigue from CMT and associated symptoms and complications. Gathering up the necessary documentation and dates, and etc, etc, etc... was like a full-time job for those months (and certainly fatiguing in and of itself)!

Eventually, Social Security told me I needed to see an IMA Disability Specialist who would give me an examination. IMA is a group that's contracted by Social Security to do medical examinations. I actually had two exams. One was psychological (since I also listed anxiety and depression in my initial application) and the other was physical.

The physical exam was degrading to say the least. I am not sure how knowledgeable the doctor was about CMT (she was very tight lipped about her expertise) but she didn't appear to know a whole lot about it. At first she seemed nice but as the exam progressed it was obvious that she was biased. She seemed to think I was faking most of the tests and that, to me, was infuriating, depressing, and totally discouraging.

She did the standard strength and reflex tests that all neurologists do. At one point she did the test where you spread your fingers and try to resist as they try to close your fingers together. After having done one hand she said to me (her exact words): "Oh, come on. Are you even trying!?" I was very angry about this response but I calmly and quietly said: "This is the same test they gave me at the Stanford CMT Center of Excellence, but that certainly wasn't the same response I got from the doctor there." To this she apologized and told me that they see a lot of people who are "faking" or trying to make it worse than it seems. I told her I had no reason to do that.

She watched me like a hawk as I removed my shoes and AFOs and socks. I am thin and look athletic and fit - I truly think she was prejudiced by my appearance at the start. She measured the circumference of my calf. She did reflex tests on my knees. She had me try to tie a bow in a string (I was proud that I did a pretty good job). She checked the mobility of my limbs (legs and arms) and was going to ask me to walk without AFOs but I didn't want to do that because I'm quite unstable barefooted - she didn't press the point. She looked at my spine for curvature. She listened to my stomach. I can't fathom how any of this could demonstrate the crippling fatigue I deal with daily!

I walked out of that clinic feeling demoralized, humiliated, and even more depressed than I was at having to apply for SSDI in the first place. It was terrible. In late August I got the denial letter from Social Security.

I'm pretty sure I won't be getting SSDI in the near future (or possibly at all). I am going to appeal and have enlisted the aid of attorney's to do so. The lawyers want a statement of disability from my treating physician but since my wife and I moved cross country in February, I haven't established a relationship with any new doctors yet. I decided to ask for the statement from the doctor at Stanford but last time she saw me was November (almost a year ago).

Really, I don't hold out much hope for SSDI anymore and I would totally understand if my last neurologist won't write the statement - after all, I haven't seen her in quite some time. I guess I likely made a lot of mis-steps in the application process and not having a current doctor nor taking a bucket-load of medications probably counted against me. It's really quite sad. CMT is a progressive and incurable disease. I am certainly not getting better and there is no need to spend on expensive doctor visits every month (especially if you're already using all the "aids" available) so I only go yearly or every two years. All medications are palliative and I don't like drugs and their side-effects in general so I work very hard not to take them (though I have in the past, just not in the last couple years). It seems unfair to me if these things indeed counted against me.

Anyway, guess I was just looking for a shoulder to cry on since I'm feeling pretty sorry for myself these days. I certainly don't want to go through all this again. It was disheartening to say the least.

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Oh Chad… please look up DisabilityDigest.com. thank God, by reading what they explain… my application was approved the first time through.

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I am so sorry…didn’t mean to seem like I was shaking a finger…defiantly not. It is terrible how difficult the make it!

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I too was initially Denied for State Disability (SDI) even though my Employer was the entity that required me to do so in order to qualify for paid long term Disability my State mandates job payment deductions for.
The SDI MD had no clue what I had let alone what to look for. He did NOT find me to be Totally Disabled per the report I ultimately obtained and read.

What I found that worked for me was ME writing the overview story (who better than the patient to recollect/know what happened, when) that I gave to my Internist who in turn signed it. I was clear with him in writing my overall Summary re: what I was doing. As my Internist had limited involvement after I was sent to my 1st and only Neuro and because he found me to be a "believable patient without any ulterior motive, he had no idea what my work up done by a FFS Rheumatologist entailed let alone the findings. I asked this Rheum to speak with my Internist which he did do but only to convey HE was in charge, he would NOT be providing my Internist with ANY records or test reports and he would NOT communicate what his ultimate diagnostic findings were.

The Neuro my Internist did direct me to decided I had “Fibromyalgia” after seeing me x2 in 2 wks. Said Idiot chose to be blind in seeing what was happening to/with my ability to move, walk, lift and hold things. He told me to go find a Rheum and said “Good Luck” finding one as it takes on average 6 mos or longer to get an Appt as a New Patient with a Rheumatologist. He was radically wrong about the DX but correct in the length of time it took to find a Rheum that accepted any sort of Ins reimbursement as payment.

Ironically, I ended up being forced to see a FFS Rheum as he was the only MD specialist willing to see me in the large County where I live. I lost track of the number of phone calls I made to local Neurologists as a Neuro IS the best qualified medical specialist in my opinion to handle a patient with CMT.

What I ended up doing was writing my own “story”. I do have a health care background and knew the terminology to use to counter the SDI MD who was likely a Family Practice MD (if that) who did the scheduled SSI medical review that involved my brief face-to-face involvement with her.

I wrote my own Appeal. I kept notes as to who I had seen when and for what. I got a copy of ALL my test results any MD directed me to have done and I incorporated the findings into my Appeal.
I then took the finished product to my Internist and asked him to review it. I was clear with him as to what I did and why- I wasn’t trying to “hide” anything. I knew the right medical terminology to use and had all my test reports to back up what I contended. Luckily, my Internist finds me to be very credible. He did read it and he, not me, signed and dated it. That version is what was then submitted on Appeal. Bottom Line: I WON.

Speak with the MD primarily involved in your care. If you are lucky, it may well be the same person who initially saw you. In my case, I saw my Internist first as I knew my problem was Neurological from the outset. He did the right thing in directing me to see a Neuro. That Neuro was a Doof with no clue or interest at all in determining what was actually happening . Dr Doof released me from further care with him after all of 2 visits, directing me to go find a Rheum, on my own with absolutely no assistance offered by him or his office. This despite the fact that I ended up in the ER with severe neck pain x2 in the same week (a cardinal presenting sign as I later found out for GBS). I refused to leave the ER the 2nd time until the Facility provided me with a Neuro to eval me. He did so, agreed I had “something neurological” happening then said I could be seen as an Outpatient moving forward then left the room before I could even ask if he would be willing to see me in his office for further evaluation. He essentially told me “Ta Ta” and I ended up being Medically Abandoned. That matters as opposed to not being willing to be seen by a qualified MD specialist at all.

What helped the most diagnostically was the Lumbar Puncture that was done (at a time when the GBS had reached my breastbone and I was short of breath with every movement I made all while having to lie face down to have the LP done at an Outpatient Surgery Center.

By far, the Definitive Test results were made by the Neuro who did my Nerve Conduction and EMG testing. The Neuro actually did the test himself (that just doesn’t happen in real world medicine all that often.) It was the most painful testing I had ever had. I asked him point blank at the end of this miserable test what he thought I had and he said “GBS”. Finally. A Diagnosis that was clearly Neurologic in nature. His test results were incorporated into what I created and I used his his exact phrasing.

While I can’t know what your current status is, I would encourage you to consider seeing a Neuro associated with a Tertiary facility in your State, preferably close to your home if possible (ie. a University/Medical School teaching institution) rather than do a phone book or online search to try to find someone.

At this point, you need an “Expert” to weigh in in order for him/her to review your records, esp your test results, and to ID what your current status and limitations are. I ended up having follow up Neuromuscular testing done after the diagnosis was made thru the Fall of that same horrible year- the testing clearly revealed ongoing abnormal findings re: EMG and nerve conduction testing. Best of all, that level of expertise needs to confirm your diagnosis and ID the limitations, physical and otherwise, you currently have. With that in hand, you stand a better than even chance of being seen/heard favorably re: long term permanent Disability.

Don’t give up. You Can Appeal and WIN. I am living proof of it.
Best Wishes, LJ

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When I applied for SSDI, I was about 5 months out from my GBS. I gave a comprehensive summary of how my GBS affected me. I was paralyzed from the neck down. At the time of my application, I was on my way to recovery. But at that time, I didn’t know how well my recovery was going to be. My career as a Risk Consultant in the Construction Industry requires me to be physically capable of climbing ladders, into trenches, on roofs, crawl into tight spaces as well as standing and walking for long periods. I explained that at my current condition, I could not perform my duties and it would be unfair for me to collect a paycheck and unable to perform my duties as required. Also it would place me in dangerous situations if I returned to work not fully recovered. I gave a comprehensive summary from the first day in the hospital to the day leading up to me writing that letter. Then about 8 months later, my employer calls and asked if I could come in to help a newly hired employee. I would only work half a day and stay out of the construction site. I agreed and being at work got my juices flowing once again. Then SSDI case worker calls and tells me that my SSDI was approved and that my checks would be retro-active to the first day in the hospital. Hearing that gave me mixed feelings. I was happy that my filing got approved but at the same time, I wanted to go back to work if I could. The main thing for me was to get back to my old self. I ended up telling the case worker that I started going back to work 2 weeks before she called and then was told that I had to return all the money we received from the SSDI.

Fast forward 4 years, now I’m slapping myself. I’m 60 now and I haven’t fully recovered from my GBS. I’m about 80% and am having a difficult time on the job. My legs, below my knees are pretty much dead at the end of the day. Both feet are still tingly and numb. My core strength is still weak. I’m totally exhausted when I get home and find myself not doing anything but lay in bed over the weekend to catch up. I should’ve taken the SSDI. But at the time, my main concern was getting back to normal so in a way, I can’t be too hard on myself.

I doubt if I put in another SSDI claim that it would be approved. So my plan is to retire at 64 instead of taking the early 62 or wait until I’m 66.

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Spencer that is a tough decision, I bet you want to maintain any sense of normality but you have no idea where GBS is going to take you. Why don’t you think SSDI would be approved now?

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Hi CG, the reason is because it been 4 years since I put in my initial SSDI claim and I’ve been working full time ever since. I kinda doubt they (Social Security) will accept my reason for disability if I use fatigue as my reason. I mean, I can pretty much do my work but it just wears me out.