BALANCE THERAPIST SAYS CNS INVOLVEMENT

Hey Everyone!

Well, went for my second session of balance therapy today.  My therapist today said the same thing as monday, that I have vestibular, peripheral balance issues, but there is also CNS involvement.  He said that it was some thing they saw with my eyes during certain tests.  I wish I knew what they talking about.  The only thing I can think of is that my eyes sort of shift different directions, horizontally.  Now, I have been telling this to several of my doctors, including my neuro/eye doctor, and he said to me, ...Well, I didnt see it..... so I guess that means I'm a liar, or making it up.  And, it's been happening more frequently lately.

So, I told my therapist to make sure he puts it all in the report to my neuro, cause I see him next week for the second round of results.  OOOH, cant wait, I'm so excited just thinking about it I get tingly all over!  

Now with this new info, including the urologist saying my bladder problems are also neurological, what do you guys think he is gonna dx me with.  I also have the high opening spinal pressure, but I dont know if its an MS related problem. or if its seperate.  I dont see my neuro/eye doc till the end of the month. Not looking forward to that, this guy is arrogant. I just wont be able to handle my neuro telling me he doesnt know whats wrong.  Do you think he should know  with all these test results so far?  CURIOUSER AND CURIOUSER

Anyway the therapist says that they can definitely help me, even with both kinds of involvement.  Very confident.  I hope it really works, cause it really is annoying therapy.  Makes me feel horrible later, and my eyes really hurt afterward, cause they  make me do those head and eye exercises.   We'll see!

Thanks guys!
Sandie

[Nancy T]

Hi Sandie. I wouldn't COUNT on getting a diagnosis, regardless of what other professionals tell you about your symptoms. Neurologists are notoriously stingy when it comes to diagnosing, especially if they don't have enough MRI evidence to make them happy.

However, your SYMPTOMS should always be treated. Hope the balance therapy helps. It's good that your therapist is sharing with you what he sees. I think the kinds of things they can see include nystagmus, defects in how your eyes move when you move them slowly or jump back and forth (like when they have you look back and forth quickly at their fingers held wide apart--saccades?). The ENG also measures all these things.

I had some balance therapy long ago but with no clear results, and the therapist really didn't tell me much. After her initial evaluation, she said, "Some people I know I can help, some I know I can't help, and you....well, it's worth a try." She made some reference to the neurologist "poking up the vestibular tree" by sending me to therapy, although after he saw my AEP results he backed off his initial cheerful talk of balance therapy and only sent me because I really wanted to try it. He, too, said he didn't think it would help me much. Indeed it didn't.

Other than the AEP (auditory evoked potentials, which were extremely abnormal bilaterally), I didn't have any abnormal findings--my ENG was always normal for both peripheral and central involvement, no abnormal eye movements.

It's great you have such a good balance therapist. I bet you will see some good results if you keep up well with the exercises. Balance rehab therapy can be very effective. Good luck!--and again, PLEASE don't get your hopes up for a diagnosis--I have seen SO many people over the years get excited and then be extremely disappointed when the diagnosis doesn't come. Be PREPARED to NOT get one. If you get one, great. If not, just focus on controlling your symptoms.