Welcome to Val's Website Pages.
I am Val. I had a Pheochromocytoma removed from my left adrenal in April 1992. I was well for one year, and then started experiencing attacks again, and yet different. I am undergoing many tests, to see if there is a reoccurrence or not, among other things they are looking for.
I have Neurofibromatosis, had a thyroid tumor, and may have Mastocytosis. They are also looking for carcinoid tumors.
I have a very supportive hubby, and 4 great kids. They are Christopher, 13, Nicholas, 11, Katy, 9, and Mikey, 7. Two of the boys have some minor signs of neurofibromatosis, but no other problems. The youngest has anaphylactic food allergies.
I live on the Jersey Shore, and go to Philadelphia for most of my doctors at this point. I am so glad to meet all of you.
Val's update as of September 2000:
After lots more testing, and a lot of trips back and forth with various doctors, it looks as if I may have a disease called Mastocytosis. ( What is Mastocytosis ) This is in addition to the other problems, but a lot of the symptoms are very SIMILAR to the Pheo.
As noted earlier, I had my Pheo removed in April 1992, and so FAR have had no reoccurrence. The doctors have determined that my Pheo, the Neurofibromatosis, and the thyroid problems are a multiple endocrine problem called Multiple Endocrine Neoplasia 2b. I had a bone marrow biopsy done fairly recently, which came back negative, but the doctors still feel that I have Mastocytosis, and will be treating my symptoms for now...
I am having another MRI at the end of October because of a mass in my thigh-- I continue to get the sweaty thing sometimes, the high blood pressure (I am on medicine for that), and a few other symptoms, but none of them feel quite exactly like the Pheo. I will NEVER forget how that felt!! I do have a peace in my heart, in spite of all the medical challenges.
I am a Christian, and I am trusting in my Lord to take me through this difficult time, as He always does...
Please feel free to e-mail me anytime, as I would love to be able to help encourage someone, and am also encouraged by others who understand what the whole thing feels like...
The two sons that have symptoms of the Neurofibromatosis ( What is NF? ), are going to go for genetic testing as soon as I can get an appointment. I will be relieved to know for sure if they have it, but thankfully, they are not sick. One of them does get migraines though, so I will be glad to know.
With understanding and concern -- Val
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