Don't know what to think... SSA CFR RE: Viral Infections

I decided to do my video today, and to do a little research before I started.

I found some links to some info that makes me want to scream and pull my hair out.
Seriously. Scream. Preferably at my old attorneys, while asking them what the hell they were thinking when they prepared my case, did they not realize they were playing with my life? Years and years of my life? (Going on 6 now...)

Well, I guess I'd better explain a bit before I go on with my rant.

Here is the content of one of the pages of the SSA's Federal Regulations describing Immune System Disorders that meet the criteria for their definition of Disability.

http://www.socialsecurity.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm#14_08

I'm specifically referring to this section:

D. Viral infections:

1. Cytomegalovirus disease (documented as described in 14.00F3b(ii)) at a site other than the liver, spleen, or lymph nodes;

Umm, I think with all the viral infections I have, an equivalency can be made for that. Or the CFS definition. But they haven't taken that into account either, it seems... (http://www.ssa.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html)

I'm also wondering if an argument could be made for an equivalency to HIV/AIDS. (Thinking of an article I've read somewhere where it indicated that Dr. Nancy Klimas, an Infectious Disease specialist in FL who treats AIDS & CFS says she'd rather have AIDS than CFS if she had to choose. (I know she was talking in general, not about legal equivalents of impairments, but...)


Pretty sure I meet this one, with my two bulged discs and pinched nerves:

1.04 Disorders of the spine (e.g., herniated nucleus pulposus, spinal arachnoiditis, spinal stenosis, osteoarthritis, degenerative disc disease, facet arthritis, vertebral fracture), resulting in compromise of a nerve root (including the cauda equina) or the spinal cord. With:

A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine)

Then there's also a section on Interstitial Cystitis:
http://www.ssa.gov/OP_Home/rulings/di/01/SSR2002-02-di-01.html

And then here's an actual case, I don't understand how it could have been won and mine not, I have all the same symptoms (if you replace HIV w/Enteroviruses) and more...

http://www.disabilitylawclaims.com/case_results/claimant-suffers-from-hiv-major-depression-neuropathy-gastroesophageal-reflux-disease-chest-pain.cfm

It just makes me so angry, re-reading the decision, what a shoddy job was done, most of the information was untrue (like how they said my POTS was mild and not a big deal at all and controlled by medication! NOT! I just couldn't find a specialist who would treat it!)misinterpreted, or based on incomplete information. (Like them failing to note the doctor at my Physical Therapy clinic was an Orthopedic Surgeon, so my pain must not be so bad, they said my Degenerative disc disease must not be that bad if I hadn't seen a Neurologist, which I had, and even had tests proving that I had nerve problems related to my bulged discs, as indicated under the criteria here:
http://www.socialsecurity.gov/disability/professionals/bluebook/1.00-Musculoskeletal-Adult.htm#1_01

1.04 Disorders of the spine (e.g., herniated nucleus pulposus, spinal arachnoiditis, spinal stenosis, osteoarthritis, degenerative disc disease, facet arthritis, vertebral fracture), resulting in compromise of a nerve root (including the cauda equina) or the spinal cord. With:
A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine);

OR

A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine);

And here's the last one, for POTS:

4.05 Recurrent arrhythmias, not related to reversible causes, such as electrolyte abnormalities or digitalis glycoside or antiarrhythmic drug toxicity, resulting in uncontrolled (see 4.00A3f), recurrent (see 4.00A3c) episodes of cardiac syncope or near syncope (see 4.00F3b), despite prescribed treatment (see 4.00B3 if there is no prescribed treatment), and documented by resting or ambulatory (Holter) electrocardiography, or by other appropriate medically acceptable testing, coincident with the occurrence of syncope or near syncope (see 4.00F3c).

Agh. I'm sorry for the rant, this just makes me so angry...makes me wonder why my old attorneys didn't do a better job, why the Judges are being so unfair, why they don't care that they're messing with my life, which keeps getting tougher & tougher... I was having some major anxiety earlier, and it got better, after venting to my brother a bit, then got worse when I came back to finish this, so I think this is why. I just feel so completely helpless...wondering if my new lawyers will do their job, and if the judge is going to be a fair one for once. It just blows my mind...And I have to admit, I'm really scared this time. Just going to the hearing, I almost fell apart last time, and after the year I've had...Living with so much uncertainty... It's almost too much to bear.
I just want to get well! I'd even settle for not getting much better but not having the stress I have right now, having someone to help me clean when I'm too weak (all the time these days, I got worse just tidying up a bit, nevermind actual cleaning!)health insurance so I can get my medications and try to keep my symptoms at bay...Just a better quality of life...
Well, my upper back is burning & going numb, so I guess I'd better lay off the typing and lie down. Always with the lying down, grr. I so want to eat something disgustingly sweet and fattening right now...lol.

Whacky Itching Could be Related to Cervical Spine Disorders

Wow, who'da thunk it? I've had weird, unexplained itching for years now...turns out spinal issues, one article specifically mentions C6, can cause neuropathic pruritis, or: ITCHING!

http://emedicine.medscape.com/article/1355312-overview#a0104

http://www.ncbi.nlm.nih.gov/pubmed/12664013

POTS and Orthostatic Intolerance Recovery: Coping with POTS

Ohhh! This might be the best site I've ever found on POTS!

POTS and Orthostatic Intolerance Recovery: Coping with POTS

Reading about "Autonomic Storms". I wonder if that's what I've been having this past week. Certainly explains my drenched clothes and bedding the other night, the ridiculous amount of sweating last few days, chest pain, palpitations, even the hyperactivity feeling... covers EVERYTHING.

Mystery Diagnosis Dysautonomia Episode: The Woman Who Kept Falling Down

Talked to my brother tonight, and he told me he saw this episode of Mystery Diagnosis on the Discovery Channel over the weekend, about this lady with neurological disorder, and her symptoms sounded like mine.

(Ironically, I was lying down in my car in a store parking lot at the time, because I've been sick the past week or so, and just running a couple of errands was threatening to set off a POTS flare, was sweating, weak, shaky, and seeing spots, and having slightly funky heart rhythms.)

I learned something new from his telling me about the show, actually. Funny, because just this weekend when it was acting up, I was telling my Dad how I felt like someone had their finger on my carotid artery. My brother started saying how the woman on the show said she "felt like her neck..."and I interrupted him and said "had a finger on her carotid artery!?" And he said

"Yeah!"

I hadn't known that was a common thing until then!

So anyways, that was cool to get to talk with him about that. Now if only I could be as lucky as that lady and find a doctor who will help me get it under control.

Actually, I may have...I went to see an old doctor of mine, a really fabulous man who is a holistic doctor with an M.D.. (The only reason I haven't seen him continually is that I haven't been able to afford long-term treatment with him.)
He thinks the key lies in my adrenals, and I tend to agree...I had another holistic practitioner who helped me at my sickest treat me for that too...So maybe in me that's what triggers it. The adrenal is a very tricky thing, because for some reason most of the medical community doesn't believe in adrenal dysfunction other than complete failure (Addison's Disease.)

He had me do a Saliva Cortisol test, and also ran another Thyroid panel, since my T4 came up low. (It's my understanding that adrenal problems would in turn affect my Thyroid, so...)

I have an phone appointment with him tomorrow afternoon to go over the results, so I'm keeping my fingers crossed we'll have some confirmation of all that, as well as tangible PROOF for the SSA that I am as sick as I say I am. So wish me luck!

Here's the show schedule for the Episode of Mystery Diagnosis. It's on tonight (2am here in the Pacific Time Zone) as well as again on October 3rd. Spread the word!

Discovery Health :: TV Listings :: Mystery Diagnosis

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Autonomic Nervous System Involvement in FM: Not so Uncommon After All

Suffering from weird heart palpitations, dizziness, low blood-pressure, and almost passing out when you stand up? You're not alone. These are definite issues for me, making it very hard to function when they flare up, and according to Current Rheumatology Reports, December 2008, I'm not alone. Actually, this might address the problems I've been having with feeling like I'm having to remind myself to breathe, too! (It mentions below that the ANS controls respiration as well...)

Autonomic dysfunction in fibromyalgia syndrome: Postural orthostatic tachycardia - Source: Current Rheumatology Reports, Dec 2008
by Roland Staud, MD, FACP, FACR
November 16, 2008

Although fibromyalgia (FM) syndrome is defined by chronic widespread pain and tenderness, additional symptoms, including disabling fatigue and dizziness, are often reported by patients with this chronic illness.

Although nonrestorative sleep may play an important role for chronic fatigue in FM, other mechanisms, including dysfunction of the autonomic nervous system (ANS), need to be considered.

Many important biological functions, such as heart rate, blood pressure, respirations, and bowel function, are tightly regulated by the ANS.

However, dysfunction of the ANS is common in FM and often becomes quite apparent after positional changes from supine to upright.

Although such positional changes sometimes result in syncope, they are more often associated with palpitations and dizziness.

Head-up tilt table testing can be used to evaluate autonomic dysfunction, and is frequently helpful for the work-up of FM complaints, including fatigue, dizziness, and palpitations.

One of the most common events experienced by FM patients during tilt table testing is postural orthostatic tachycardia syndrome, which is defined as a heart rate increase of more than 30 beats per minute after more than 3 minutes of standing upright.

Source: Current Rheumatology Reports, Dec 2008;10(6):463-466. PMID: 19007537, by Staud R. Department of Medicine, University of Florida College of Medicine, Gainesville, Florida, USA. [E-mail: staudr@ufl.edu]