Health & Fitness

Neurofibromatosis.

Health & Fitness

Posted by: Hilary

20th Feb 2012 01:51am

I would like to hear from anyone that has Neurofibromatosis. My husband has it. He suffers a lot of pain. He has seen specialists and doctors but nothing seems to help. They think it's nerve pain, mainly in the leg and sometimes back. Sometimes he wants the leg removed but the pain might just go some where else. A lot of people have NF and there'd be people going thru this sort of pain. I'd like to hear what has helped you and if you belong to any support groups. Thank you.

Comments 5

mungo
  • 25th Mar 2012 03:46pm

Hi Hilary, Apparently I have neurofibromatosis - I only found this out late last year when taking my son to the paediatrician (my son has ADHD and conduct disorder). Well I was sitting with my son in the consulting rooms and the doctor was looking at my face (I had what I thought were a couple of moles) he then asked me if I had any birthmarks (cafe o'lait spots) - yes a few I replied - the doctor then went and got another doctor to look at me - rather unsettling at this stage - he then wrote a letter for my GP to get a referral to a neurologist to get the diagnosis confirmed. The paediatrician explained that having a parent with NF can cause behavioural problems and learning disabilities in their children - odd really when I just thought I had a couple of moles.

I've since looked up on the web and found out more info about NF (I'd never heard of it before the paediatrician mentioned it) and I've also got the brown lumps in my irises - so I'm about 99% sure that I do have it - I just have to wait for the specialist appointment in May.

I personally haven't had any physical pain - maybe I'm lucky, but I do have three children and each of them has a mild learning disability and two of them have behavioural problems.

Hilary
  • 18th Mar 2012 01:07am

Thank you so much for your replies. Ian (husband ) will try these remedies and let you know how they go. Thank you, :-)

Kaz
  • 17th Mar 2012 12:34pm

Im not sure but I see an osteopath for my ailments similiar to this pain when I am sore .But when I can I use a magnesium spray after my shower on the area ofmpain every day,plus take magnesium tabs and drink shot glass of cider vinegar every day,hope these remedies help!

terreur
  • 17th Mar 2012 09:00am

There's a girl I study with who was diagnosed with NF. She's told me about having vinegar soaks before and they at least temporarily eased the pain. It's pretty simple, your husband hops in a bath with the water as hot as he can stand it and a full cup of vinegar mixed into the water for 20-30 minutes or longer if he can, making sure to keep the water hot. Apparently, apple cider vinegar works best but white or brown vinegar is fine. I'm really sorry this has happened to you but hopefully you find a way to get through. Have you considered asking your GP if there are any nearby support groups? Without knowing where you're from, it's hard to say. Good luck getting some answers

shaza
  • 16th Mar 2012 09:32pm

hello my son has this as well, he doesn't complain about pain but he dose have tumors in the optic never which has caused him to go blind he has other problems too but is a happy lad and has a great positive attitude

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