Lyndsey, Ontario, Canada
I first noticed a bump on my wrist/hand area approximately 3-1/2 years ago at the age of 22.
I began noticing more of these bumps on my arms/legs/trunk area. I went to the family doctor a few times and he tried a couple of different topical creams with no improvement. From there I was referred to a dermatologist who did bloodwork (all normal excepting titer level) and also a biopsy which came back inconclusive. He thought I possibly had lupus so I was referred to a rheumatologist who did all the necessary testing, etc. and confirmed that I did not have lupus. I then returned back to the dermatologist for more bloodwork (results same) and another inconclusive biopsy. I also went to a meeting where the dermatologists get together and bring in their patients with strange cases and they examined me also. No one there was sure either. The dermatologist then said I could do three things:
1. Do nothing
2. Inject all the bumps/lesions with cortisone
3. Take a medication which would affect your blood and/or eyesight
I was not comfortable with any of the above so I asked to be referred to another dermatologist in a larger city. My appointment was in June 2013. First a history was taken by one of the younger doctors and then the dermatologist came in to take a look at me. Right away he knew what it was and started talking to the other doctor in terms my mom and I did not understand. I asked what it was and he said to write down Degos. I was told to watch for stomach problems/stiffening of the hands/any lupus signs. After that all the other doctors young/old started coming into the room and putting up magnifine glasses to the lesions and taking pictures. It was so frightening considering we didn’t even really know or understand what Degos was. After they all left the room my mom and I just broke down and cried. I was sent for bloodwork at the hospital there and while sitting waiting my mom and I looked it up on the internet and were absolutely shocked. We had no idea of what this disease was really all about and we weren’t really informed about it at the appointment. He did want me to see an Ophthamologist though and also referred me back to my original dermatologist. I have seen the Ophthamologist and had extensive eye testing and all tests were clear. The Ophthamologist wants to follow up with me every 6 months due to the rarity of the disease. After the diagnosis, I wanted to speak with my dermatologist so I called and he would not speak over the phone so I waited the two months to go see him. He seemed very aloof about it all and was quite surprised as to why I would have all these questions. He did not think I needed further follow-up and said I just have a mild case of degos (?). We still asked him to refer us to a gastroentologist though. Since then I have had one instance of vomiting/diarrhea that lasted a few days (maybe flu/food poisioning). I have also had one episode where I suffered an aura, with severe migraine, and where I had some difficulty in putting sentences together, etc. I did go the emergency department (no one had heard of Degos so they had to research it there) they did perform a CT scan which came back normal. My mom and I were not happy with the do nothing option so we started to search on the internet and came across this site. We received tremendous help and guidance from one of the doctors and thanks to him I now have a wonderful specialist here that is willing to work/care for me and compile all the information from all the doctors/tests. I am also planning on sending in samples to the doctors in Germany and my family sending their blood samples to the doctors in the U.S.
We are thankful to have found this website. Judy you have done amazing work on this. Also, many thanks to the doctors/researchers involved also. It has helped me and my family tremendously. I don’t know where we would have been without this site.