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Where can i go for a rare/undiagnosed/confusing medical problem?

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Old 01-31-2009, 05:22 PM   #1
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Where can i go for a rare/undiagnosed/confusing medical problem?

Ok I've had this really bad medical problem relating to my spine for about a year that seems to be getting progressily worse over time and in these past few weeks i feel like i life is threatened and that i don't have much time to live.

I am currently seeing an internationally known neurologist dr. vernon neppe but waiting 2 weeks inbetween for my 2nd appointment will not do as I will myself dying.
I know if my doctor hasn't been able to figure it out nobody on this board can so I just want to ask where I can go to recieve help for something like this.

my symptoms and problems stem from my spine i feel. I feel My spine is not attached to the muscle on the left side of my back i feel and since the brain is so coneected with the spine it's causing my severe neurological problems like extreme confusion, weakness, vision so blurry its like the vision frodo has in lord of the rings when he puts the ring on and everything is blurry around him. i feel my body is so confused because my spine is not properly wokring that it it is forgetting bassic body functions such as eating which i have not done in 2 days and sometimes i forget how to breath and start suffocating. im too confused right this second to explain my symtoms better then this its just my hands are shaking so uncontroble and i cant see the screen very well.

I used to be really smart and artuculate im sorry this is hard to read but really right at this moment i can barely comrehend what i am typing sorry for it being hard to read. Im only 17 and im so terrifed of dying which i feel like will happen any day now with my symtoms. Ive been to the ER 4 times and since they cant see me dying visibley they make me wait for 4 hours then give me some pain pills (i also have extreme constant mind numbing pain in all my body coming from my spine) so the ER i don't think can help me and i can't wait for the doctor.

I guess what im asking is what do i do? im willing to talk to my parents and fly anywhere int he country if there is some kind of center for confusing medical problems i could stay and and maybe get 24 hr monitering to help come up with a diagnosis. i simpley cant wait any longer for doctor appoitments and doctor tests i need to do something Im asking you guys for advice.

again im so sorry for this message being terribly writen and maybe not making much since but as i said my brain is simpley not working and maybe if im still ok i can edit this post to better explain what im ttrying to say.

sorry this doesnt make sense and is in the wrong forum maybe? im just really scared of dying im too young i want to do more stuff

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Old 01-31-2009, 08:41 PM   #2
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Re: Where can i go for a rare/undiagnosed/confusing medical problem?


Welcome to the boards!

When I was reading your post I was wondering if it were possible that your symptoms were side effects to a med you were taking...until I read that you are only 17!!

You need to have your doctors rule out what they can rule out, but if they still don't have any explanation for what's wrong with you it may be wise to consider learning about lyme disease and it's coinfections which can be ciruclated by the blood stream and as a result impact many different body systems. Lyme disease is not easy to diagnose.

Good luck and let us know how you're doing.


Old 02-01-2009, 07:46 AM   #3
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Re: Where can i go for a rare/undiagnosed/confusing medical problem?

i am just wondering if you have actually had any types of scans done on your spine at all? you keep mentioning that "you feel' that this is the source of your problem but i don't see where it has been a confirmed type of diagnosis anywhere? just obtaining one contrasted MRI would hopefully reveal just what if any true problems you may have going on in the spinal areas. you can obtain a referral for an MRI right thru your family doc. depending upon what actually shows up,would really dictate just what your next steps should be. but you DO need to get your spine fully scanned just to see if this IS indeed the root of your ongoing symptoms. if nothing else,it would also possibly rule it out as the source. looking into that brain too while they are doing the spinal MRI wouldn't hurt either. it is just another area where what your symptoms are could also be a possibly involved area too. i do wish you luck with this and hope someone can find the reason for your symptoms. but getting that MRI would be the best place to start in trying to find that main cause. it just needs some looking into. please keep us posted as to what you find out. **
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

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