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jennsfriend
  • By jennsfriend
  • Posted October 25, 2009 at 8:40 pm · 6 replies
  • In Help desk
  • Shared with the public
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My best friend has been living with an extreme case of NF1 &2 her entire life. As a result of the disease she has now got scoliosis and stenosis of her spine. She has had 6 surgeries in the past 10 years, can no longer walk and falls all the time. She is covered with fibromas and they are now beginning to form on her tendons. They love her spine, there are "mulberry bushes" between all vertabrae. Her doctors just up her pain medication. She is only sleeping 30 - 40 minutes at a time due to the pain she is living with. IS THERE A GOOD DOCTOR anywhere??? Does anyone know of a clinic that UNDERSTANDS NF?? I can't stand to see her like this anymore. She is down to 90 pounds, she just can no longer eat much because the medicine makes her so ill. Please let me know if anyone knows of a good doctor or clinic??? Concerned Friend

Explore topics in this discussion:

Cancer Neurofibromatosis Scoliosis Pain Falls

6 replies

jennsfriend

Thanks so much, that is what she has been told already. As well as there are so many tumors they really would not know which ones to remove. She is covered head to toe, internally as well as externally. And as I said they are now growing on her tendons.

Raulargentina

Try to contact Dr. Susan Huson St Mary`s Hospital of Manchester to have an advice. I think she`s a very human lady w ith deep knowledge. You can try to look her in http://www.nfauk.org. YOu should investigate a little, let me know if you could

jennsfriend

Thanks so much, have sent an email. Will let you know if anything comes back.

baileysboots

We complain about our NF symptoms that effect our dailey lives, then hear about someone like this, and realize that there is always someone who has a has it worse. I see you are in the U.S. (from Ca.) & you probably have talk to or seen the specalist @ UCLA, Stanford, or one of the other teaching/research facilities that specalize in NF. They are excellent and are comparable with the east coast ones. If not their contact info. (as well as for the other states) is available on the nfinc.org website. Wish we could do more than just offer you our prayers.

sadderstar

MD Anderson hospital in Houston Texas has a wonderful team of doctors. I haven't been in many years but I do remember that. They were all very kind and very willing to help and lead you in the direction you might need to get the help you ask for. I wish I could give you names of who to contact but I sadly do not remember. The website is very helpful and informative though. Don't be discouraged about how the site seems to only focus on childhood neurofibromatosis. I am fairly certain they will still at least help point you in the right direction. I will attach that link for you at the end. Also I have heard there is an amazing laser radiation clinic in ny that has done amazing things for people like all of us. I am looking for that site now and I will post it as soon as I find it. It is somewhere in my hundreds of bookmarks in my browser. :P Radiation may sound harsh but the way this doctor approaches it seems very promising. There used to be a girl on the site who visited him and was so happy she did but I do not believe she still posts. I will send you that doctor asap. I am so sorry she is going through all of this. I agree with the poster above, sometimes we sit and think about how awful it is that we got handed this and fall into a slump of self pitty and then hear about people who have it so much worse. It is hard not to be angry at this disease in times like that. Wish her the best and love and hugs from everyone here, because I am positive I am not the only one sending that out. <3

http://www.mdanderson.org/patient-and-cancer-information/cancer-information /cancer-types/childhood-neurofibromatosis/index.html

PVA

I saw this stuff at my local CVS pharmacy. It cost 6 or 7 $ for a sample. I wish I had the $ to try it. If any one has tried it please let us know how well it works.

http://www.neuragen.com/coupon/

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