Doctors don't know what's causing this

[tuggle]

I have, in the past few years developed major balance issues,I can't walk or draw a straight line,I've almost fallen several times,I have been to different types of doctors(regular,ENT,neurologist),had several different types of tests,MRI,tilt table, x-rays,bloodwork,etc,they all showed nothing, and tried different kinds of meds,none of which worked.Everyone I've seen says it neurological,but they don't know what's causing it.I was diagnosed with sleep apnea,and now I use a CPAP machine,but I still wake up with headaches,though not as severe as in the past.My dad has had 11 operations on his neck and back,but I haven't had back problems,and I'm shorter then him (he's 6'3,I'm 5'9)It's getting old,and expensive to be told "I don't know what it is"Can anyone help?.

[tuggle]

I'm not taking any meds,none that were perscribed for me worked.The tests I can remember were a tilt table test,an MRI,bloodwork for ataxia(I think I spelled it right)hearing check(the doctor said I have "excellent" hearing)X-rays.I called the neurologist,and asked for copies of everything he perscribed,and results of the different tests he suggested.Emory is in Atlanta,I live in south Georgia,so it would be an almost 500 mile round trip.I've had three knee  and two hernia operations,the hernias in the past year.My familys medical history on my dads side is kind of weird,I don't really know.He has degenarative disc disease,but it's not genetic I think.Thanks (again)for the kind words

[LisaJF]

You can send the CD of the MRI along with your other work ups to that place "Emory" as you call it.  You would have to obtain the records from the doctors (will take some effort on your behalf unfortunately) and then send "Emory" all the diagnostic tests, blood work, HPI(history of present illness), PMH (Past medical history) which your primary MD should have and can have typed up for you to send to them.  This way, if they look at it from afar and say they want to see you and have an inkling of what could possibly be wrong, then your drive would not be a waste of time and $$$$.

However, my question was, do YOU know what blood work they have done?  What actually was it?  Do you have copies of that said blood work? If not obtain them and you can share them with us :)

Don't thank us for words of encouragement.  We are all here to help one another in the best way we know how.  

I'm not saying I know everything -- I don't but I think I would start from there with obtaining all your records and then call Emory and ask if you can send your documents first and have the specialist and/or doctor review it and get back to you.  Let them know that they are quite far from you and you don't want to go there for nothing.

Lisa

PS - let us know

[bbxx]

Are you on any meds?

[tuggle]

All my bloodwork came back clear,and I have had my MRI looked at by different people,they all said they saw nothing out of the unusual.I have my MRI in my house,and the neurologist I was seeing suggested I go to Emory,but that's a lot of miles to drive to possibly be told "I don't know what's causing it".Thanks for the words of encouragement.

[selmaS]

Hi...I have to agree with Lisa in that u must be ur own advocate...with that said...do u have copies of ur MRI's and the reports?

Too many times we r told the MRI of the brain is clear, only to find out later we have an incidental finding which may be the cause of the issues...do look into ur old MRI's and the reports. Get a 2nd opinion and review of them to be sure...even then.....u may want to do some research to know for sure.

Push for answers, u know ur own body,

  "selma"

[LisaJF]

Hi tuggle and welcome to the forums.  

I am sorry that you are going through this tumultuous balance issues.  It would be my guess that this is neurological too -- however, what else is in your history other than sleep apnea and CPAP?  

Your MRI's came out normal?  What about your blood work -- what tests did they do?

Yes, I can see how this is getting old -- and falling due to inability to keep your balance isn't something that you push aside and say, "I don't know what it is".  Have you gone to a different neurologist? Try a second opinion? Would your health insurance cover that?

Let us know what you are doing.  Remember YOU are your best advocate and only YOU know when something is wrong with yourself and what is not NORMAL.  Push the doctors, it is their job to find out what is wrong, that's what they went to school for is to help people!  Hello!??  

Wish you the best tuggle --

Lisa