Re: Re: need help!! tests back...

[Guest guest]

In a message dated 4/6/2004 4:38:25 PM Eastern Standard Time, nantynannie@... writes:

One thing, I would mention the implants, but don't over emphasize the possible connection, if the doc figures there is a link fine, if not, you don't want him to think you are nutty. I think that once a doc thinks a woman is nutty, it's all

i totally agree, if you mention that you think the two are connected most doctors won't commit to that and that is when they start to turn a deaf ear on us....i am just so tired of all these doctors...love BJ

[Guest guest]

it is possible to get disability without positive lab work and cfs, fms diagnosis. just give the ss office plenty of info on your illness...doctor's notes, etc. if you have a letter from your doctor stating that you are unable to work for at least a year due to your illness, it will help too (that's advice from my attorney). also, be prepared to be turned down the first time because there's about a 95% chance that you will be. you will have to appeal once or even twice. i would highly recommend getting an attorney who specializes in disability cases. they tell you what you need to do and most times, take care of getting info from your docs for you. if you have to appeal twice, you have to go before a judge and you'll probably need an attorney then anyway. good luck.

From: " nantynannie " <nantynannie@...>

Reply-

Date: Tue, 06 Apr 2004 20:18:00 -0000

Subject: Re: need help!! tests back...

Shari,

There are plenty of people on disability with CFS and FMS. One of

the hallmarks of the illness is no positive lab findings (or very few

positive lab findings. I think it depends more on your diagnosis and

recommendation from your doctor to get disability. Don't put too

much emphasis on the lab tests. I don't think many with CFS and FMS

have a positive ANA.

When I went to my infectious disease doc, he took 17 vials of blood

and tested for everything known to mankind. After that, he took even

more blood for more testing. I would just make a long list of every

symptom and a short list of questions about tests, but if he is worth

anything, he should know what to do. If he looks at you sideways,

then you should just leave! One thing, I would mention the implants,

but don't over emphasize the possible connection, if the doc figures

there is a link fine, if not, you don't want him to think you are

nutty. I think that once a doc thinks a woman is nutty, it's all

over, they just want to put you on depression meds. That is just my

experience and advice, others may disagree.

One thing you can ask for to document the brain fog is a SPECT scan.

Unlike other tests, the SPECT shows blood flow in the brain. If your

blood flow is disrupted to certain areas, your thinking can be way

off, like and Alzheimers patient. My scan did show results, which

made me feel like I had proof of the brain fog.

As for meds, I stopped taking all pain meds as they did not seem to

be working, I feel the same now as when I was taking the meds. I

think the body builds up a tolerance to them anyway. For the sinus,

I cave in to the antibiotics as much as I hate to do it, it is the

only thing that works.

Sorry I don't have better advice, hope you feel better soon.

Ann

> Hi everyone. Looks like the ana test came back normal which I just

can't

> imagine. Any ideas on what I need to do now? I am scared that

since they looked

> normal, this may affect my short term disability... can it get it

on the

> fibro and cfs alone? I am scared - Iam still sooo sick and it is

frustrating.

> The sinuses are geting worse - I am almost tempted to take some

antibiotics

> again. I can't take it anymore. It hurts so bad and I am on 20mg's

of methadone

> daily and it isn't touching it. Also - my appt w. the infectious

disease doc

> is coming up soon... I want to make a list of things to ask so the

brain fog

> doesn't get in the way. Can anyone advise on what to talk to him

about? I

> have never been tested for silicone, candida, mycoplasma inf, etc.

Can someone

> please help? It took so long to get this appt I am scared I will

forget to

> cover everything on my visit. thanks a million

>

> love

> shari