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yup.. they are lying! #153502 08/24/09 12:51 AM
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TrudiD Offline OP
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Finally had my appt with a civilian Rheumy.

Getting all up to speed ....

Discharged mid 1995 because of problems in SI/pelvis area. Medical discharge with stress fx pelvis (at the same time the AS dx was being considered, but wasn't considered in my med board).

A few months later, East Carolina University doc (Dr Wortman) diagnosed me with inflammatory spondyloarthritis because of pain, HLA-B27+ and CT scan showing narrowing of my left SI.

The national VA agrees and has rated me 60% disability (it may go up now, though).

My local VA docs all say my SI and hips are all clear and normal via their xrays & exams and I do NOT have spondylitis. They are diagnosing me with a-typical fibromyalgia compounded with depression, among other things (aka: it's all in my head).

This has been going on for 3 years now, due to my extreme frustration.

................ as of my appt on Friday.............

Civilian rheumy agrees with initial ECU doc. He says it COULD be a mechanical problem, but probably not and he'll treat me as an inflammatory problem with sulfasalazine for 3 months. After that we'll try enbrel or other biologic if necessary.

(whoot whoot! eeeee!! FINALLY!)

After reading my VA radiological reports (that showed 'nothing abnormal'), he had concerns that I should have visible damage after so many years of disease so it probably wasn't AS type.

I suggested that since I was in remission for 10 years due to pregnancy, that would mean I was only in my 4th year of active disease. He nodded and agreed with my logic, stating that pregnancy often does put women into remission.

Hubby told me to make my hips pop and asked what that was all about. Doc was shocked at the noise and said "I've NEVER heard that before!" and after a brief exam determined it was a true hip problem.



Thankfully, he believed me when I told him I'm convinced the VA xray reports were not accurate, so he took an xray of my pelvis for his own look-see.

He said IMMEDIATELY he was able to distinguish my left SI was fuzzy, my pubic symphisis was not normal and my hip sockets were pitted with osteoarthritis issues. No questions or second guessing about it!! Damage is there!

I cannot wait to read his report!

I am in an odd state of mind about all this:

~ I am elated that it is not all in my head.

~ I am relieved and confident with the treatment options I am receiving.

~ I am thankful even more for having all 5 kids, which gave me 10 years of less damage for my age. (now to convince hubby to have another one! It would be for a good cause!? LOL!)

~ I am pi$$ed at the horrible VA care or lack of care.

~ I am terrified about the damage visible in my hips.


I feel like puking when I think about all this, though. Too many emotions going on. I guess the most important thing is that I now have solid confirmation that my local VA is NOT taking care of me and is bordering on mal-practice. My last VA xrays were from June... there's NO way things changed that much within a couple months!


~ Trudi
35 yo mum to 5 kids!
dx with 'probable AS' in the middle of 1995 in the Navy. positive inflammatory spondyloarthritis dx by the end of that year. no meds really work yet. am trying sulfasalazine plus a lot of alternative therapies.
www.madebytrudi.blogspot.com
Re: yup.. they are lying! [Re: TrudiD] #156945 09/24/09 12:31 PM
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nosailnomo Offline
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Hang in there Trudy,

The VA told me I had muscle spasms in my back for eight years, 10% rating. After spending six months in a wheelchair, a local Neurosurgeon took pity, turns out I had three herniated disks and my legs were numb I have permanent nerve damage because it wasn't treated way back in Germany (they lost my records before I left Germany).
I had two surgeries on my own dime, then the VA stepped up with 60%, turns out they had even screwed me out of the additional money I should have received for my two kids.
The truth is simply that the VA is not designed to help the veteran, it is designed to appear that it is helping the veteran while avoiding helping the veteran.
Get yourself a VA Patient Advocate, located at your VA hospital. Get them involved with every aspect of your treatment. Your advocate is your strongest ally. Learn to work within the system, it's the only way. (This is what nationalized health care could be).

Re: yup.. they are lying! [Re: nosailnomo] #157815 10/04/09 01:53 AM
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TrudiD Offline OP
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I agree with you. So sorry to hear of yet another casualty of the system! (This is why I am against nationalized healthcare!)

I am working with a lawyer right now. Since hubby is a diabled vet, we knew about the kids.. a few years after though.. we have 5 kids and that adds up quickly! Thankfully, we both can claim the kids!


~ Trudi
35 yo mum to 5 kids!
dx with 'probable AS' in the middle of 1995 in the Navy. positive inflammatory spondyloarthritis dx by the end of that year. no meds really work yet. am trying sulfasalazine plus a lot of alternative therapies.
www.madebytrudi.blogspot.com
Re: yup.. they are lying! [Re: TrudiD] #160084 10/26/09 12:41 AM
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DaleD Offline
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The advocate recommendation was a good one. Let me recommend something further. The American Legion often has advocates with offices in VA hospitals. Whereas the VA itself often won't lift a finger to help you, the Legion advocates are generally absolutely wonderful. It's been my experience that they take each case as a personal challenge. I hope this post finds you on a good day. I know they can be rare.


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