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Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 5/30/2008 4:05 PM (GMT -6)   
Rocks & Hard Places & Being Stuck --

Since so often Lupus is diagnosed by symptoms rather than by definitive blood and labs tests, it turns out there is a VERY MAJOR PROBLEM in the system.

Since dx, I've only had one or two positive ANA's -- some bloodwork positive for inflammation, but nothing that clearly documents fatigue or cognitive disorder.

After being covered for 8 years, my long term disability came up for review...they say that there is no definitive evidence that I have Lupus, let alone that I am disabled because of it.

I've received a copy of their files -- interestingly enough, they really do have surveillance tapes & such -- not that the tapes show anything but that in a 3 day period I can drive a car & visit the grocery store. Not that walking was ever a part of my disability -- it's that fatigue & cognitive dysfunction keep me from thinking at my former level.

My attorney doesn't even want to read the files until we get neuropsychological testing done. It is supposed to be able to show if I'm as smart as I used to be.

Sounds a lot like magic, since they fabricate how I was previously based on the work I was doing, education, etc. --- there isn't a "before" test to compare to an "after" test. And even if it isn't magic and is something that really holds up in court ---

Do I really want to know that my brain is permanently compromised? Do I really want to know that it isn't damaged but that I just can't think for some unknown reason? Has anyone had this kind of testing?

Has anyone had to fight against a long-term-disability company?

Lost & Alone....

Regular Member

Date Joined Oct 2007
Total Posts : 323
   Posted 5/30/2008 5:03 PM (GMT -6)   
Lynn...Oh I feel for you I had short and long term they were a pain in the b..t. every month they sent me forms I had to have the docs fill them out just to see if I was still sick they even called me they said you had lupus for all these yrs. how come all of sudden you can't work I was mad they were questing me, but I had to try to explain everything.I told my doc. about it he couldnt believe it, so the next time they sent me forms I gave it to my doc. the nurse told me he sent them a letter and I never heard from them again. We have to fight for everything. I'm now on ssd and my long term makes up the differance what ssd don't pay. I paid for long term they should go by what the docs. say. I don't think that I was ever under surveillance but who knows.I might have been the way they treated me. Sorry had to get it out I kind of know how you feel. Debbie P.S I'm glad you have a lawyer
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/30/2008 10:38 PM (GMT -6)   
Hey Lynnwood,

My brother had to do exactly that for his VA benefits. It was a long process and they actually LOST all of his records proving that he spent a tour in Vietnam and was injured there!!!! They also lost documentation showing that he became a US citizen while in the service. AKKKKK he is now a man w/o a country!! Really LONG story . . . but finally, slowly getting resolved.

I hope your attorneys work hard for you. I don't think they'd go thru all these hoops on a contingent fee if they didn't feel like they could win it for you.

Such a disgusting thought to know they were following you around!! Talk about stress!

Who would have thought?????


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 5/30/2008 11:00 PM (GMT -6)   
Hi Lynnwood, bless your heart! I know I havn't posted much lately but I do read when I can. You sure have been going through a lot of stuff lately.
I have social securit disability so my isn't the same. They still said I have come back in 3 years and be retested. It doesn't sound like you have had this test before so I'm wondering how on earth they can figure out now what's happening. I mean where the baseline? Do they grade you on a curve what?
hang in there hun, I hope they get this testing out of the way so you don't have to worry about it anymore. It's just crazy what they are putting you thouggh
I'm so sorry
God Bless
Depends on which rheumy you ask! stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 5/31/2008 9:42 PM (GMT -6)   
((((Lynnwood)))) Sorry about this. I think our lousy economy is making everyone crack down harder. I found out that I have diffuse atrophy in my brain, most people do as they age, but there is more in me in my forties, I have the brain of a sixty year old. Most CAT scans, especially here in the state of GA where most everyone has brain damage, at least where I live, they don't note it, even if it is abnormal. So you might get a CAT scan with contrast asking them to look for atrophy. If you have any kind of sleep apnea, COPD, or anything, you probably have some atrophy. This will help.

Another thing would be to get sensitive testing like I got at Mayo, and they were pretty cheap, where it showed I had the antibodies, even though they weren't elevated. The sensitive tests were done at Mayo. It showed I had not enough antibodies to have the test read positive by the tests accuracy standards, but that I do indeed produce the antibodies, which is abnormal. My rheumie told me they aren't high because I'm being treated and everything is in good shape.

That's the other important point. Of course you are doing better, you are being treated and probably in remission, but you can flare up too.

Then taking pictures of rashes, etc. and all. Even fibro and chronic fatigue are known to be valid disability problems, without the lupus. My fibro is really horrible and fatigue too.

I don't know if Emory can do those really sensitive tests like Mayo does. It would be a good way to see what is going on. Also, perhaps looking at your liver, a common cause of fatigue, through an abdominal ultrasound, might show some stuff too.

I hope that you can get the testing you need to keep things going. I lost out on my disability and was needlessly homeless. It was awful. I used to stay in the mental hospital sometimes and that helped my case some as well, not that being homeless doesn't make you go nuts, it can. So can having diseases that aren't treated.

I hope you do okay and solve this problem. It would be nice to see someone benefit from their paid disability, since I got ripped off.

Take care and I will pray for you.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/1/2008 6:41 PM (GMT -6)   
Lynnwood, I don't really have anything to add, just that I'm really frustrated for you that you have to go through this. Wow, I can't believe (well, actually I can) that they had survailence of you). I really hope your lawyer can get you through this one. Hang in there and take care and know that we are here for you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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