The online support conversation at http://vhl.clinicahealth.com is strong and wonderful. You will find great support there, a forum to ask questions about whatever is bothering you, and a warm community of people who understand what you are going through.

Here is one example of a posting in the online group. What would YOU like to say to him?

Dig’s Diary

First Entry

I have not been diagnosed with VHL.

I’m a man who has had cysts and tumors of various sorts my entire life. In my twenties doctors told me I was just “one of those unlucky folks” who tend to develop these things. At 37 I was diagnosed with clear cell renal cell carcinoma, which was successfully treated with radical nephrectomy.

Several months ago I had an MRI for possible multiple sclerosis due to visual disturbances I have been having … pain with eye movement, temporary loss of vision, dizziness. No MS lesions were seen, but they did find a large cyst of some sort on the left side posterior of my cerebellum. The neurologist said that it is likely just an arachnoid cyst that many people get and is not causing my symptoms. I’d like to believe him, but the headaches and pressure are getting much worse and I have unbearably loud tinnitus in that ear.

Second Entry:

Last week I had an abdominal CT for my annual cancer follow-up and another nodule was found in my left adrenal gland. My doc says this is likely just a benign adenoma but has ordered an MRI for a clearer picture. He has not mentioned anything about blood work. Incidentally, I have always had low blood pressure on account of a genetic heart defect … 90/60 is not uncommon. However for some inexplicable reson my blood pressure of late has been skyrocketing and my blood sugar is up as well when it has always been very good.

This is all very frustrating to me. I can no longer believe I am just this “unlucky” guy wo tends to develop random cysts and tumors. Although my doctors would have me believe that these are all just unrelated coincidences, my thoughts are that thee is an underlying cause for this all. This is what led me here to this board.

I hate like heck to self-diagnose, but I think it’s time to take the bull by the horns and look after my own health care. My next stop is to a retinal specialist to get a good look at my eyes, and I’m also going to ask my primary care doctor to order blood work to check this “nodule”. Any guidance as to what specifically I should be asking my docs for would be very much appreciated.

Thanks,

Dig62

Excerpts from postings by one member of the VHL online discussion at ClinicaHealth. What would YOU like to say to Dig? Sign up and join the conversation at http://vhl.clincahealth.com

As printed in the VHL Family Forum 15:3, September 2007. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.