RESULTS OF TESTS,... STILL IN LIMBO

[sandie490]

Hey all,
It's sunny out, but what a gray day it was for me.  I have been going through all these tests. Let me tell ya, I'm losing my confidence in a couple of my doc's.  Went to an ENT for the vertigo.  Did all the tests, ENG, hearing, and the caloric, I think thats what they called it, where they put cool and warm air in your ears and watch you eye reaction.
Well,  the Doc came in and said that I have inner ear damage, and nervous system involvement.  He told me that the whenever there is a tilting of the body when you walk or stand, that always involves the central nervous system, and that I needed the balance therapy, for the both causes of my vertigo.  The other I think was peripheral or positional.
Anyway,  I had that done, I had the memory and cog testing, the mri's of my brain and thoracic, and the neuro-opthamalogist, and went back for the results on the 5th.  My neuro puts the disc up on the computer with the mri results and starts to show my husband and I whats goin on.  As he is explaining, he shows me the one single lesion that I had orgiinally had, and says that there are no others present.  He then goes to the spinal thoracic and says that everything looks normal except for the disc problems.   Then he starts to tell me that he doesn't feel a dx is good for ms cause there is only one lesion.  
So I said to him, what about what the ENT said about the central nervous involvement with the vertigo, and he said the the ENT sent him a report that said its all peripheral in the ear not central.  I said.....Thats not what he said to me.  He said down right in front of me, and repeat several times that there was definitely central involvement.
Then he said that he couldnt dx me with just the  one lesion, and that I could either wait 6 months, and repeat the mri, or do an LP.
Did the LP the next morning.  Got those dreaded headaches the next day.  This was the 6th on Saturday, he called me on Mon morning.  Right after the LP, he mentioned that my spinal pressure was high.  I do have a history of ON, and Dryeye.  On Sunday when I woke up with that horrible headache, I also noticed that my hearing in my left ear was half gone, but not only that, I was hearing echos, and the pain was worse on that side.  When he called me on monday, I told him about my hearing pain and echoes, and he said that that was not common, and that he only sees that once every 5 years.  He said it would resolve itself, which it did, though I sometimes still have the problem.
Anyway,  they called me with the results of the LP, they said besides the high fluid pressure, everything was normal, but the Dr will discuss everthing including the elevated pressure when I come in in 2 weeks.
I am so depressed, I thought he would come back with some dx for something, even lymes.  So now I'm back to square one.  All these tests, and no definite dx.  I mean I don't know what he's gonna say about the elevated pressure, but I am so upset with the ENT Dr, and also the balance therapist told my hubby the same thing.  He told him that I didn't have regular vertigo, and that it was central related.  What do I do now?  So are sx that I am having just to be ignored.
You know, right after the LP he said to me that this isnt always a guarantee that they will find something.  I said to him, if it comes back normal, you still have to figure out whats wrong with me, cause my buzzing, vibrating head scares me.  He said....you worry too much, one day at a time.

Thanks for being patient with the long read!
Hugs everyone!

Sandie

[ack65]

I can relate - lots of tests no definate answers.  It is the most frustrating experience and no wonder you feel down.  Please know you are not alone however and there are a whole group of us in limbo looking for answers and routing for you.  I often wonder how they diagnosed ms before mri and other tests and why can't they just work to help us with our symptoms without a diagnosis or saying they are caused by "stress".  Just remember as the world swirls by (literally for those of us with ongoing vertigo) there are people who understand how difficult this is and care.  Hugs - Anna

[Celery47]

Hi sandie,
Ugh - doctors!!  I guess I basically just wanted to repeat what LuLu said - yeah, your frustration is totally understandable.  Hugs back -
Celery

[Lulu54]

Hi Sandi,
It's understandable why today was so gloomy.  You probably know we have people here who have been in limbo a long time - their doctors believe that something is wrong, they just can't find the answer.  

You are smart to ask him to work through this and figure out what is wrong.  It doesn't have to be MS, you just want answers.


good luck with the next appointment.

Lulu