SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Neuro Check Up
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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Neuro Check Up

I had my check up with my regular Neuro yesterday. It was nice to hear that he was about as angry as I was about my employer demanding I waive my HIPPA rights and allow them full access to my records. If they require any further information I will just go to the obnoxious Neuro they required for my 2nd opinion. She didn't gather much info so she wouldn't have much to tell them anyway.

He wanted to order more tests, but understood my wanting to wait until after I pass my "fitness for duty" evaluation. If I work even one day this year it will mean an extra year of health insurance for the whole family. So I have another appt. in 6 weeks and orders to fit me in immediately if I seem to be having a flair or if I am targeted at work and I will get the tests ASAP so I can get treatment or a Dx for the protection of the Americans with Disabilities Act. He spent 1 1/2 hours with me. It is nice to have a doctor that actually seems to be interested in what is going on.

The roads were horrible! Snow blasted ice that was slick as glass, 50 MPH winds, and very limited visibility. 30 MPH traffic on the Interstate. I'm really glad I didn't drive myself. I feel much better than I did, but my reactions still seem slower than normal and oncoming headlights or in cars behind me make my right eye really hurt. If feels like my pupil doesn't adjust correctly.

I don't know why I am in such a strange mood after this appointment. I pretty much volunteered to stay in Limboland, I didn't get bad news or anything, but I am still in a weird funk.

Valerie
2 Comments
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551343_tn?1350880995
Ah Val your stuck in between a rock and a hard place. I can understand why you hesitated and waited for another 6 weeks. In the grand scheme of things if it was MS it aint going anywhere.

YOur journey sounded horrible omg that would be enough to stress anyone. I dont understand the Disability Act in American even ours is all over the place and they are trying to take money off us by changing all our benefits, so we have to fight for every penny. That makes us stressed enough as it is, as every benefit has the worse forms to fill in.

I think its wonderful this guy stayed with you for 1.5 hours wow I wish. In the NHS we are lucky to get 10 minutes and in that time you have to tell them everything that is going on. By the time you finish the appointment is over and we get no further forward.

I think the fact this guy treated you with respect must have made you feel much better and even calmer.

It must be really hard in America to feel ill but know that you need to work to get that extra health insurance for you and your family. Thank goodness we dont have that system here.

Glad you had a good appointment and you got home safe. Big hugs Mariax
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1627868_tn?1333889942
It sounds like you have a really good neuro!  It is completely understandable why you would want to wait for a few months...I probably would too.  You need to get back to work so continue your health insurance or you won't be getting anywhere, correct?

Too bad your neuro can't somehow stick up for you and your violation of your hippa rights!  Most people in the medical profession, and especially lawyers, really frown upon that...maybe you can hold that over your employer's head, lol!

(((hugs)))
Sarah
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