Nerve Problems

[dquinn007]

Nerve Problems- please help

Hello,
Earlier in my life I was hooked to a nerve conduction unit and it was believed that I had a hereditary peripheral neuropathy (pressure sensitive). Over the past 15 years since the test (especially in the last 5 years) I have progressively been losing my hearing. I also notice my balance getting much worse. I was on a cruise ship for a friends wedding and since then I experience very weird sensations in my head (almost a humming sound, not the normal ringing that I hear...humming like a BUzz or a seizure(?) at times) which wakes me at night and sometimes I feel like i have varying whole body ataxia. I have been feeling spacey recently and just got off of a plane ride from MD to Cali and back and feel very off balance and strange again. I feel like I am on the plane when I sit still...like I feel the left to right movements, etc. I wonder what kind of damage could possibly cause this and what I can do from here. I am always off balance and my ears ring 24/7 so it is not any form of just vertigo. I am only 32yrs old and would like to try and live my life without these annoying problems, or at least get somewhat better if possible. I know you are going to tell me to go see a neurologist, which I have done so many times in the past, but before you instruct me to do so, could I get a few opinions and suggestions on this subject? My background is in medicine so feel free to be clinical in your response. Thank you very much in advance

[Dr_prakesh]

Do you mean to say that you have a diagnosis of HNPP?
If so then have you had a genetic diagnosis or just a clinical / EMG based one?

I personally have encountered families with CMT variants with hearing loss so this is not unheard of..I believe there was a paper in annals of neurology regarding anticipation (earlier onset in later generation) in this sort of CMT.

Who else in your fmily was affected?

Do you have the NCV results to hand?

Thanks

[dquinn007]

Thank you for the questions. Yes, the prelim diagnosis (if there is such a thing after 3 hours of nerve conduction) was HNPP. My mother has slowed nerve conduction based on the testing that was briefly performed and my grandmother has nerve as well as hearing problems. All say that they have had a pressure related problem throughout the years with nerves. I had the NCV dont at Johns Hopking neurology clinic when I shadowed two heads of the dept about 13 years ago (I do not have the results and never took whatever "painful?" genetic test was proposed because I thought even if they find that I have it, they cant do anything to regenerate or slow the damage so why go through more pain). If I have HNPP which the JH panel presumed, would these kind of symptoms after a cruse trip multiple plane rides in a day affect me in this way? My balance has been getting worse over the past 5-7 years, especially if I shut my eyes and try any type of motor action. What are your opinions on these symptoms and questions?

Thank you

[MG (Admin)]

I think the genetic test is very important to secure a final diagnosis and stop the need for further testing.
It is a simple blood test, if it is positive it would be very informative whilst a negative answer less so.

When was your last NCV?
Do you have the results with numbers to send?

[dquinn007]

I do not have the NCV results, I dont know if I ever had them sent to me. I was contemplating contacting records at Johns Hopkins and asking for them, but have not done so yet. If you are saying that the genetic test is a simple blood test then I will go check it out and take it. I was told, back when I was going through the testing process, that it was some weird and painful proceedure. I will have it done asap. Thank you for your reply's and information. Secondly and most important however are the questions about symptoms in my original post. Could anyone help suggest whether these tremor and buzzing symptoms, as well as a more permanent balance problem could be caused by the cruise ship? Again, all these symptoms came about just after I got back on land and have not subsided. The trip was 5 days long and took place 7 months ago. Thank you again

Derek

[Dr_prakesh]

Could anyone help suggest whether these tremor and buzzing symptoms, as well as a more permanent balance problem could be caused by the cruise ship?

The NCV results may be helpful to answer this.
Did you have vertigo?

Could you attach a short video clip of the tremor?

[Dr_prakesh]

Could anyone help suggest whether these tremor and buzzing symptoms, as well as a more permanent balance problem could be caused by the cruise ship?

The NCV results may be helpful to answer this.
Did you have vertigo?

Could you attach a short video clip of the tremor?