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Old 06-29-2009, 03:22 AM   #1
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what do you do , when the doctors have no clue whats wrong with you

i have no clue what to do , the doctors have no clue whats wrong with me , i have seen an onocologist a hematologist a nuerologist an eye dr my regular dr , and all say diferent things , who do you belive , im at a losss , my primary dr says im perfetly fine , the eye dr says i need to see my blood dr cause something is wrong and it doesn't have to do with my eyes ( i had bleeding in my eye) so i went to them and they say its not my blood , i need to see a nuerologist and he says its just migrains ..... i turn purple if i sit or stand for to long , i recently got sent home because i had a headache so bad i couldn't stand or i felt i would pass out and when i got home my brother notcied a blood spot in my eye , a week or 2 before that i went to the bathroom and noticed alot of blood in my stool , and i get so light headed if i bend or sit or lay down and then stand i almost black out i have to close my eyes and grab something to keep my balance, at night i wake up at least 2 a night because my right arm will go completely numb and i can't feel it for a good 10 - 15 minutes , , but all the drs have a simple explanation for everything , but i feel its somethings worse , but what do you do when your told its normal , but you know its not, i just turned 20 , the only dr who even seems concerned was my eye doctor , i don't know if i should go back to him and see what he says but he is an eye dr and my eyes are fine ...i just wish one day ill find out whats wrong , i fear it may be to late by the way things are going ...

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Old 06-29-2009, 09:09 AM   #2
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Re: what do you do , when the doctors have no clue whats wrong with you

did anyone of the docs you have seen actually even do any type of real brain scans of any kind,j ust to see what may or may not possibly be going on up there? the one place that i have found the best type of help for first my son when he was in liver failure from a really insane liver kidney disease,then myself when i had been found with a very crazy type of glob of blood vessels within my spinal cord was a good university type teaching hospital?

any good teaching hospital just really is at times peoples last hope for answerts to really off the wall types of conditions or diseases too. they just teach at these facilitys and really do welcome the challenges. the are just really great teaching/learning opportunities for up and coming docs and specialists there. if you happen to live near one,this really would be where i would go at this point since no one, except the eye doc(you really NEED to obtain all his(and any other docs too that you have seen) clinic notes and speak with him on what he feels is going on too) is actually taking all your ongoing symptoms really as seriously as they should be.

unfortunetly when alot of docs, espescially the specialists, just don't actually know what the heck is going on with any given patient, they will at times just blow you off. rather than admit at times that they just don't know,they make the patient feel like its all in their heads. i am sure you know what i mean by that. but i would really speak to that one eye doc about possible options. hopefully he can convince your primary to refer you to a good university type teaching facility. i really do think this would be your best option at this point. you just need some answers and a real Dx would be nice too. at the uni type hosps, you just also get teams of docs from different depts all being called in when needed to help narrow down possible involvement of different body systems too. they really can do much more at these types of hosps when you have unknown causes and wide ranging symptomology. this is just what i would really try and do if i were in your situation. hopefully you live close enough to one to be able to get there. i do wish you luck with all this and hope they an find the answers for you soon. please keep me posted, FB
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.

Old 06-29-2009, 07:13 PM   #3
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Re: what do you do , when the doctors have no clue whats wrong with you


You need an MRI of your brain. I am surprised not one of your docs took the time to get you in to have one. There are a number of things that it could be. The numbness and eye pain could indicate multiple sclerosis. The "near blacking out" when bending down and the headaches sometimes points to a brain tumor. It could also be something as simple as a sinus infection. You need an MRI. Better be safe than sorry.

Old 06-29-2009, 09:06 PM   #4
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Re: what do you do , when the doctors have no clue whats wrong with you

I agree, a teaching hospital is the best place to go. If none are in your area, travel to one, your life is worth the expense.

Mayo Clinic
Soutwestern Medical Scool in Dallas, TX

are two that come to mind.

Old 06-29-2009, 10:42 PM   #5
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Re: what do you do , when the doctors have no clue whats wrong with you

Laura: I hope you read my reply to your other post. Wanted to mention I have my regular doctor, a neurologist, and a hematologist who are on my case now that I've been diagnosed with PV. Definitely tell your regular doctor you want more tests done, I had the bone marrow biopsy and because of blood clots in my brain I had an MRI done. This is what confirmed the PV. Also they said I have a mutation of the JAK2 gene, I don't know what test caught that, but it's something that most people with PV have too. Hope this helps!


Old 06-29-2009, 11:52 PM   #6
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Re: what do you do , when the doctors have no clue whats wrong with you

hey go with your feelings - generally a patient knows his own body - doctors think many people over react - i think most dont.. i would be very adamant and demand that they check you more thoroughly - i believe someone is missing somthing - unfortunately most doctors are not good ones - u will probably need to see about 25 before u actually can get a diagnosis - if dont persist you will never.. best time to get results is now -if u have been sick 5 - 10 yrs or more they will be more lax to blow u off as u have been living fine with it - as they would assume.. best is to see drs and not stop looking til u get to the bottom - u just need one good dr..... they do exist

Old 05-16-2011, 05:16 PM   #7
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Re: what do you do , when the doctors have no clue whats wrong with you

it looks like you go to the same medical facility that I do good luck.

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