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Getting a diagnosis
Share your own experiences with getting to a diagnosis. What symptoms did you first experience? How can your own experience help others to get an earlier diagnosis?
Mom's Cataracts
- By beccaloo · New reply September 25, 2008
- 2 replies
- I've been diagnosed w/VHL for about 6 yrs. now and am, what I like to call "Circling the Airport" status. This means right now we're waiting and monitoring. I get my kidneys, pancreas, and brain + spinal ...
Could I have VHL after all?
- By Dig62 · New reply September 7, 2008
- 13 replies
- Hi all, Long time since I posted. Quick review of my history: I had clear cell renal carcinoma (right kidney) at a young age (37). Then last summer during routine CT scan they found a nodule on my left ...
Mouth sores? tongue?
- By joyceg98 · New reply August 27, 2008
- 1 reply
- I don't think this is directly related to VHL, but may be a side-effect of some treatment and/or nutritional deficiency, but please help if you can. We have a member who has developed mouth sores following ...
Testing Children for VHL without symptoms
- By Lamariposa · New reply August 12, 2008
- 12 replies
- My husband has VHL, I haven't tested my children ages 11 and 6. I don't want to have them tested and find out they have the gene and, when their in their 20's get screwed by the insurance companies not ...
VHL Tests
- By Bandit00 · New reply August 4, 2008
- 44 replies
- I have a friend that went to the hospital one night for what she thought was kidney stones. After she got there they discovered a 10cm mass on her kidney, some cysts on her pancreas and some spots on ...
funny feeling
- By chewbacca1965 · New reply July 24, 2008
- 3 replies
- Hey all, I am wondering if anyone else has had the same expierience after having a brain tumor taken out that I have. In Dec 2007 I had a tumor removed from the left cerrabellum, in the back of the head ...
VHL?
- By shannonMN · New reply July 16, 2008
- 3 replies
- I am a 51 yr old white female with an angioma in my brain, 8 hemangioma on my liver. I also have primary aldosteronism, although so far they have not discovered any tumors on my adrenals. My creatinine ...
anyone the same
- By batley · New reply July 9, 2008
- 5 replies
- hi is there anyone out there who has one adrenal gland left and had dental work done like a tooth out but just wasnt healing , i am findin with anythink now im not healin very quick at all , ive had teeth ...
anyone misdx with ms instead????
- By blsvlo · New reply July 8, 2008
- 7 replies
- I am still searching what is happening... 2005 i was dx with ms because of several lesions on brain and now a few on my spine... now i have strange symptoms that the neuro says the ms is not causing ...
the word terminal
- By batley · New reply June 21, 2008
- 3 replies
- does anyone used the word terminal with vhl , i have heard a few people say this and other who argue otherwise, i see it as no cure for an illness and its life time thing , like cancer i supose, is this ...
update on scans
- By batley · New reply June 14, 2008
- 3 replies
- hi people , update on my results , from my mri , brain and spine , i got quite a few more small tumors in brain and spine , my neruo sergon dont think my hadpain is commin fron these, what shocked me ...
VHL test!!!!!!!
- By Chiquilla_336 · New reply June 12, 2008
- 4 replies
- Hello everyone, today i had my VHL test done at Dana Faber, I will get the results between 2*3 weeks. Mom is more nervous than I..... Its not that dont care because i really do but she doesnt get it ...
House
- By gale · New reply June 12, 2008
- 4 replies
- I'm in Florida and the episode where they diagnose someone with VHL is on. Gale ...
An Odd Question...Do You have AIDS?
- By FridayThe13th · New reply June 9, 2008
- 1 reply
- Yeah, this is an odd one but I figured I'd throw it out here because it is something I've wondered about and also because it's driving me insane how little traffic this group is getting and it needs to ...
NIH
- By gale · New reply May 9, 2008
- 8 replies
- Where is everyone staying now a days when they go to NIH? I just called American Inn and they now want $149 for an NIH patient. Thank you for your input. Gale ...
Brain Stem Tumors
- By Nikkirph · New reply April 30, 2008
- 8 replies
- Hello everyone. We just found out that my husband has a tumor (hemangioblastoma most likely) in the brain stem. From the scans it seems to be in the cervical area rather than further up in the brain ...
Kidney adrenal tumors
- By dietexperts · New reply April 9, 2008
- 1 reply
- Hello Everyone, My husband and I have been HELL and back for 1 month. They have done all the tests in the book after finding an adrenal and kidney tumor, as well as lytic lesions on his spine and illiac ...
Prefference of VHL
- By Batsec · New reply March 14, 2008
- 4 replies
- I might be wrong but is it possible that VHL is more common in females and that ir more agressive aswell with females? I just noticed in my family the females are more prone to get VHL and are affected ...
bi-lateral adrenalectomy/ narcolepsy
- By littleshe · New reply March 8, 2008
- 1 reply
- I had a bi-lateral adrenalectomy 30 yrs ago, 30 days ago I went for a sleep study and the test came back saying I have Narcolepsy. Does anyone else have VHL and Narcolepsy???? My doctor asked me if I ...
am i crazy???
- By jeanmarie · New reply February 7, 2008
- 4 replies
- i have vhl, and now it make sense that i got it from my mom, she died at 39 with brain spine kidney tumors. her father and her brothers also died at 35-42 while having brain surgery my family is from ...
