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Breaking up mountainmoma's long paragraphs for us neuro lymies to read. MM, please hit enter moer often and double space; thanks so much!

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Originally posted by mountainmoma:

I found the Spec scan usefull as it is an objective test that can clearly show that your brain isnt workning properly.

A positive western blot is comforting for ourselves, in that we finally have a diagnosis. But, it does not show loss of functionality. A spec scan can.

But, I do not think all lyme patients necessarily show problems on a spec scan. The spec scan shows where blood flow is limited in your brain, if this is what is causing your cognitive problems. I suppose cognitive problems could be caused by something other than swelling and reduced blood flow.

Reduced functionallity is independent of what our diagnosis is.

When you apply for Soc Sec, you will not be given it for a diagnosis, ie you dont get it because you have Lyme disease.

You are disabled because of reduced functionality, because you realy cant do the work.

Objective tests, such as a spec scan, can be helpful because they back up your self reported symptoms, they show a real physical reason to explain why you cant think or remember right any more.

I found this test helpful for explaining to formerly disbelieving others. I sent a copy off to my exhusband.

An expensive deffinitive test that says I have markedly diminished perfusion....holds alot more weight than my saying what is going on.

In the eyes of these other people, tests dont exagerate or arent lazy etc... The test result is very clear.

And, you should not hesitate to apply for disability. It is not easy to get, you dont get it by asking.

If you are able to get it, it would be another item "proving" you realy cant work (You would be much more likely to not get it even when truly disabled than to get it when you could somehow work !) And, that is what it is for.

Would you think badly of yourself if you couldnt think because of a head injury form an auto accident?

Would you think you shouldnt get disability while you got better and retrained your brain?

This lyme in your brain is just as bad. And like the auto accident IT IS NOT YOUR FAULT! Its not your fault, it is real, and you deserve the communities support while you heal.

YOu did not ask for this.

Get proof if you can, get the spec while you still have insurance, apply for disablity

I am sorry your family is not more supportive. But, you need to take care of yourself.

Apply but dont tell them (family) about it until if/when you are awarded it.

It takes A LONG time, initial denials,. appleals, etc...It can take a year or two to get disability, so start now.

Find a disability lawyer by callin county agencies for referals. They only get paid if you get the disability, and then out of back payments owed, so it doesnt cost anything out of pocket.

You are not alone in this. Sometimes I think it would be easier if I had a disability that "showed",

like having no legs...BUt, mostly I am thankful that I can get around and have the functionality I do have.

I know I am lucky. And, as for these other people, their behavior is their problem.

Maybe someday they will also have such an opportunity, as we have been given, to be on the other side and learn compasion and grace and strength first hand. Hang in there

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