I have schwannamatosis but need help!

[Adlon57]

I cannot get help for this rare condition, but am now getting side-effects, losing sensation in my hands, legs and back, especially when sitting for short periods on chairs etc, am able to 'work' sensation to some sort of normality, having had this condition since 14 old, benign lumps growing on my nerves are now affecting more parts of my body, now sensation in my hands is my latest. Just come out of hospital for pancreatis, extreme pain in my abdomen and back. Inconclusive as various blood injection, hands are dramatically black with losing sensations in both hands. Have bad feeling an incompleat surgery for benign growth/tumour done in 1997, only two third removed has restarted again, could mean losing power of my legs? I have JME a specialist for that a very good GP but they do not have specialist knowledge for this particular medical condition!

[Adlon57]

Thanks Concerned! I have bad days and good days [mostly bad] I try to look on the bright side, essentially for my own well being! You are the first to give me some sort of routine to attempt, I have been told what I have, but NEVER roughly what to avoid, in reality a basic diet. Something to start with???

[COwithAMN]

Hello

I have never heard of your rare condition but I have a lot of sympathy for your situation. I also know a lot about rare conditions because I also have one. Mine is called adrenomyeloneuropathy (AMN) and affects myelin and axons, causing progressive impairment and spasticity of leg muscles, and bladder and bowel dysfunction.

AMN is a 1:20,000 disorder; Wikipedia says your disease is twice as rare.

I can't offer any medical or dietary advice - your disease is a bit like mine, where no drugs or other interventions are available, other than antispasticity drugs.

But one thing I can suggest is that you start a HealthUnlocked group for your disease. I have one going for my disease - you can see it at healthunlocked.com/amneasier - and it has been terrific in helping people with the disease share their solutions and also meet other sufferers who may be near to them. We have nearly 900 members worldwide.

We also have meetings every two years where people with the disease meet face to face.

In your situation, one of the worst things is to feel alone and isolated. With a HealthUnlocked group, you will start to find others with the disease and over time perhaps find ways of alleviating some of the symptoms.

Let me know if you want help setting up a group.

With best wishes

Chris

[Adlon57 in reply to COwithAMN]

Thanks COwithAMN! Schwannamatosis was recognised as a medical condition in 1973, ironic my first signs were in 1972, when I had a 'undiagnosed lump' removed by surgery. In the same group as neurofibromatosis type one and two, indeed I was referred to as having neurofibromatosis type two since 2006. Only two years ago a neurologist noticed I had several differences, diagnosing that I had indeed have schwannamatosis [sometimes referred to as NF3] I have benign growths actually on my nerves, underneath the skin, on my arms, legs and chest. That is the accepted signs of schwannamatosis, but I believe the growths can actually grow on various internal organs as well, I have had had three operations already since 1972 [two left arm and one on the spinal nerve {incomplete surgery as to near nerve}. I believe my pancreas is now affected {acute pancreatis} my general health now is too poor, but the idea of a group is a real good one, probably sometime Chris, I will be in touch!

[Adlon57 in reply to COwithAMN]

Chris, would love to, EXCEPT, I have NEVER met ANYBODY with 'SCHWANNAMATOSIS'? Cannot set up a group with just one person, ME?

[COwithAMN in reply to Adlon57]

You can and you should set up a group even if it's just you to start with! The thing to remember is that others with the condition will find it. Google will do that for you. They may be anywhere in the world of course. You will be amazed. After all, the first thing anyone does these days is a Google search and when they do, Google will return your group.

The other thing you can do is to set up a Google alert for Schwannamatosis. Go to google.co.uk/alerts to do this. Anytime Google finds the term used in a website it will send you a reference. These could be research articles, organisations etc. I have found this to be very useful.

I see from your other post that you are in Northern Ireland. You seem to be getting good treatment as far as it goes. The other thing to consider is to get a referral to the National Hospital for Neurology and Neurosurgery in London. They may have one or two other patients with the condition. They are very good and I have been attending there for 30 years. I live in London.

Finally, I detect that you are very positive and optimistic about the disease. So good for you. I try to be the same - I am 75 and have had symptoms for over 30 years.

Cheers

Chris