I had been in limbo for awhile now. This summer, my LTD company informed me that it was "re-evaluating" my claim because I had been receiving benefits for 24 months, and there are some limitations in my contract. The limitations are for mental illness and "self reported" (anything not measurable by diagnostic tests, like pain and fatigue) symptoms.

In truth, I was expecting a denial because the LTD company contends that I have somatoform disorder, based upon the opinion of a shrink they paid to force me to undergo a "personality" exam (they refused to give me benefits unless I did this plus a full-day functional capacity test). So I figured I'd be able to beat this easily, as it is impossible to have somatoform disorder if you have legitimate physical disease present. The letter I got in the mail on Tuesday, though, completely blew me away.

It is 16 pages long! They do mention their "diagnosis" of somatoform disorder, but they also go through summaries of medical records from 13 different doctors I have seen and have essentially discredited every single one of them! They also went through my SSDI file and "proved" that the administrative law judge who approved me for Social Security was incorrect as well.

But the most damaging part of the letter is where they go over the records of an incompetent Sioux Falls rheumatologist whom I only saw once. Unfortunately, this guy had never heard of sero-negative Sjogren's syndrome and told me that I could be cured of fibromyalgia with vigorous exercise. Because he put in his notes that he felt I was not disabled (I found out later that he did this to lots of people who were very obviously disabled), the LTD company is using this as "proof" that I can do sedentary work.

I called my lawyer. He said that he had never seen a more lengthy, complicated denial letter. He also said that this is not the slam dunk case he thought I had, that the LTD company is unlikely to agree to settle and that it will probably have to go to court, which could take years.

This would be much easier to take if I truly had a negligible case. But I have very real ailments that go beyond the arbitrary "self reported symptoms" label. You can't fake a positive lip biopsy, or a positive EMG, or a sleep study, or a glucose tolerance test, or a gastric emptying test, or an endoscopy.

Yet it is entirely possible this LTD company may get away with denying my benefits. All because I am sick enough to go to 13 doctors who believe I am ill, but not sick enough to actually be dying of anything, so all the findings are distorted to suit a company that will do pretty much ANYTHING to save a dime. Getting approved for Social Security Disability was nothing compared to this.

This is not to say I'm giving up. The appeal has already been filed. And when it is denied, I will appeal again.

But I am absolutely exhausted at the thought of the uphill battle I have ahead of me. A battle that I shouldn't even have to be waging. I have done my part to prove I am not well, yet this company can arbitrarily decide to violate our contract so that my financial future is in jeopardy.

I do have an appointment set up with the Mayo Clinic. I will go into more detail about that in another post as this is already too long. But I really hate that this one hospital visit could make or break my ability to receive disability.

One thing I wanted to ask about here: the letter mentions my neuropathy and states that it is too mild to preclude light or sedentary work. This is the statement they are basing their conclusion upon: "June 22, 2004....nerve conduction study and an electromyalgram study with mild left extremity sensorimotor neuropathy, upper extremity normal except for a borderline prolonged median nerve intrapalmar latency." Does a mildly abnormal result on tests actually indicative of mild neuropathy, or is the LTD company being misleading?

I ask because my neuropathy gets far worse when I am sitting at a desk for long periods of time, as one would when doing a sedentary job. I need to change positions frequently, to elevate my feet multiple times per day to prevent edema, and to stretch. And despite these things, I still get the numbness, tingling, electric-shock type pain and other sensations that I do not believe are mild.

I will eventually get my head together and fight this latest setback. But for the moment, I need to grieve a little and ask the world for a pat on the head of sympathy. Even disabled warriors are human.

fanfaire

--on the grounds that your biomechanical disabilities are insufficient to keep you from doing sedentary work, a logical grounds for appeal would be that you are in chronic pain.

The EMG/nerve conduction studies you mention should not be enough to say you are not in great pain. The company is interpreting the studies you mention as indicative of only a "mild" neuropathy, and indeed it may well be--but only of the larger fibers that can be measured in that way. It says nothing about the condition of your smaller fibers--the ones that subsume pain and temperature--and these are not measurable in that way; moreover, painful small fiber damage is common, even characteristic, of both Sjogren's and gluten sensitivity.

I say "should" because I know this, and you know this, but it's unlikely that their reviewers know this (or would admit it if they did); it's also unlikely that many "independent" doctors know this (although the situation is better than it used to be, I know there are still those who dismiss seronegative Sjogren's, even with positive lip biopsy, or are surprised at finding villous atrophy in someone that has a NEGATIVE anti-tranglutaminanse celiac antibody test, although that happens more than 10% of the time).

Absolutely you should appeal--and make it tough for them: inundate them with links to studies that support your situation (many of them are available here through the Useful Websites part of the board; I'm sure we can produce others). Push for additional testing. (Are you going to Mayo?) I'd love to see what a quantitative sensory testing session would show, or a skin biopsy (I don't believe you've had either of those yet, right?)

We empathize--few, if any, of us here think that LTD companies are in the business of paying out benefits (just another piece of ammunition for my rants about a single-payer health system).

I am sorry to hear you have to go thru this, but it isn't surprising. Millions of people get the same response every year. Insurers always do this, when you are on disability, you have to battle constantly to keep it. It is a lifestyle of constant, and I mean constant IMEs, submission of documentation etc. It is constant hideous stress.

Check out what the MS criteria for disability are. People assume MS is disabling....not according to the insurance companies and SSDI.

I had a lip biopsy that was supposedly positive for Sjogren's but blood is negative, so therefore, I do not have the disease. Since then I have found that there are neurological conditions that affect the nerves to the glands and not the glands themselves. So it is not really Sjogren's in my case, even tho the gland appears that way....it had no lymphocytic infiltration. Even if you had all the blood markers, they would still tell you that you can work.

Insurance companies are there to make money for their CEOs and stock holders. They know people can't afford lawyers, and cases are more and more difficult to make...and you can't survive on nothing while you fight them. It turns out to be easier to get a job and eventually get reasonable accomodations. Don't mention you are handicapped until you are thru your probationary period or you get fired. Being a disabled vet is a joke these days too....no one wants to hire disabled Iraq War Vets.


Talk to your attorney and see what he feels is best.

Also, your insurer did the job for the next social security disability determinator, (terminator) when your case is up for review, which is every 3 years. Be very careful about what releases you sign, to whom and for what.

I can give you links for seronegative Sjogrens and case histories too. Just let me know when you are ready for them. I am so sorry you are having to go thru this. I've got my fingers crossed that Mayo will give you the answers you need. Anyone with seronegative Sjogren's knows the limitations that come with small fiber sensory, axonal, and the mental fog that goes with it. How can you work when you can't remember things?

Billye

Hi, cyclelops, you are right about requirements such as those for MS. I have a friend with a mild case who doesn't even need meds, and I have a friend who nearly died a couple of weeks ago from it. And I know people with Sjogren's and fibromyalgia and neuropathy who work (although they are constantly on the verge of being fired because of having to take too many sick days).

But Social Security has a Blue Book which very clearly lists the criteria for disability for a variety of ailments. They are in the process of adding Sjogren's syndrome as a category. And you can always qualify if you have multiple disorders that, when viewed as a whole, add up to an inability to work (which is how I'm listed at present).

And Social Security by law must consider the effect of chronic pain and severe autoiummune fatigue on the ability to work. Those are very well documented in my case. But the LTD company calls those "self reported" symptoms and a basis for termination of benefits (although I hear that this contractual clause has successfully been challenged in court).

I do agree that I'm gonna have a fight on my hands when Social Security reviews me, which could be anytime now. But my main objective there is to prove to them that I my medical conditions have not improved, which I have documented as recently as June of this year. Their own consultative medical examiner told them that I was disabled, so they would have to prove some sort of fraud was involved in order to overturn their original decision, which I suppose is still possible (but I hope not likely).

I would give just about anything to be able to go back to work, to be the master of my own financial destiny. But what employer is gonna hire someone who is so fatigued she dozes off at her desk, who is so brain fogged she forgets the simplest tasks, who must run to the restroom once an hour, who yelps in pain whenever the lightning bolt of neuropathy hits? I went through every reasonable accommodation my last job could provide, including special lighting, erognomic seating, ergonomic keyboard and mouse, stands to hold paperwork at eye level, electric staplers, etc.

Don't get me started on the war vets. It is disgraceful the way they are treated (or should I say not treated) sometimes. And even when the VA rates them 100 percent disabled, Social Security still denies them benefits!

Did you ever figure out what neurological condition you do have? There are so many possibilities that it really is bewildering.

I will be doing as much research as my brain can handle.

fanfaire

Thanks for that. I'd like to see some links, even if I just copy them someplace where I can read them later. I think it would help my lawyer too as I am his first client with Sjogren's; the majority of his previous cases have been people with chronic fatigue and/or fibromyalgia.

I do hope to be able to work again someday. But right now, I can't even walk more than two blocks without needing a wheelchair.

fanfaire

http://www.hopkins-arthritis.org/art...clin_pres.html

http://msj.sagepub.com/cgi/content/abstract/9/3/256
http://www.aafp.org/afp/20020915/991.html

http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

This can go on and on. Just do a search on sero-negative Sjogren's Syndrome on the medical publishing pages: http://www.sjogrensworld.org/links.htm

Billye

'financial review' gummint compliance wise...they get their behinds kicked to kingdom wherever?
Such companies spend far too much time 'getting around' and getting off folks with real disabilities. That and 'preserving the 'assets'' Why, preserve, I wonder if not to use? Very peculiar mindset for sure.
I hope you have the strength and courage and also FORTITUDE to get those turkeys, even if only your case.
My heart mind and hope are with you all the way. I wish I could offer more support, but you got what I have for you. - j

Hi

I had LTD and SSDI at one time, my husband and I both decided not to continue with the IME's they scheduled for me about every 6 months...it was too violating. (That said, keep on fighting if you can afford the attorney and stand the IME's. I went back to work for 2 years, stopped working and then was self employed, and then stopped working. As of last year, I still qualified for SSDI, but my docs wanted me to keep working as they felt I would deteriorate if I didn't....now they tell me I am 'disabled.'....however, now I did not contribute for SS for over 10 quarters so I can't apply anymore. I am basically out of luck unless I work for a while again and contribute, which isn't going to happen as nurses need their hands, and mine do not work, not to mention, I can not lift 50#, and no, nurses do not get desk jobs, unless it is knocking people like you off disability (no thanks) or the nurse has been with the institution for umpteen years. Plus I have been out for too long. I also recently flunked a typing test at the local voc school...(I was amazed, as I didn't think my hands were that far gone! So there goes the clerical job. My only option is self employment.

Right now I have small fiber neuropathy, (sensory and autonomic) which has not responded to IVIG or 16 weeks of IV steroids, so it is not inflammatory. There is research out there to indicate that some people get sicca from neuropathy.

My labial biopsy was read at Mayo.

I am seen at a tertiary research center regularly and am in the process of testing for the more rare disorders that have SFN as a component, in addition to the other symptoms I have. My case is progressing fairly rapidly but complicated by an old spinal cord injury from a high speed head on, and an old case of Lyme. Some of these disorders I am being tested for are orphan diseases and just not worth discussion on the boards due to rarity. If I end up with one, I will post all the findings, until then, I am still 'idiopathic'. I do have some really great minds working on my case, as they feel it might be key to other cases. It is hard to wait for definitive answers, but I would rather do that at this point than try any thing just to see if it works. Some treatments are totally contraindicated in some diseases that cause SFN, where in other diseases that cause SFN they are mainstay. Lyrica and other anticonvulsants are just one example, so it is best to wait right now for me, anyway.

I have significant gastroparesis, it is part of the autonomic neuropathy. For me erythromycin helps a bit. There are some meds that help, but it is not a pleasant condition, and most meds for it aggravate my horrible RLS. I have a ton of issues and don't want to bore you or others with the extensive list. (Trust me, it is boring.)

MS criteria are 'functional'. That is key in proving disability. Insurance companies and SSDI are getting brutal. I referred you to that list so you can see what the 'functional' issues are. (I did workers comp at one time....I quit pretty fast, as there were people I felt that were disabled and my bosses disagreed...yet they handed out money to the one's with bigshot lawyers.) I also did consultation for personal injury lawyers. Disabled people really do not have the protection that is commonly thought. You have to have money to take these cases to court, few lawyers take them on contingency and believe me, you never want to pay an attorney by the hour.

I am one who really doesn't want to get started on Iraq vets, my son is one of them, hit by an IED 3 weeks prior to deployment home. But it is good to hear other people care.

I will talk to you tommorow we were in a car crash tonight and i'm a
okand so it old Bob. Now i have to find where they hauled my van and wheelchair is..
What is happening to you happened to my husband ,my heart goes out to you and it is making me cry..This is to sad for words,please we will help,we have all been through this crap just to often..A nurse tonight said i have been a nurse for 18 years you just get rid of that PN and you will feel better.What
help us..I told her i was a nurse for 25 years and your nuts.First time i crack
up a Dr.
Rest dear one, wow 16 page letter I have heard of that once,but we finally got my husband help,never give up,and you have a right to grieve,i so sorry, Sue