Schwannomatosis or Neurofibromatosis Type 3 later symptoms!

[Adlon57]

I have had this very rare neurological type condition since the age of 14, I am now aged 68, finally diagnosed in 2017, whereby schwannomas/benign tumours form on the nerve canals of the body, hand, legs, and torso, not as yet known as on the head, although I have Juvenile Myoclonic Epilepsy also since the age of 14, [cause a fall in the school swimming pool] My first schwannoma was on my left forearm, surgically removed ["hard lump?"], that was my first operation for the condition. I had one about the size of a walnut on my spinal cord [only partially removed, for obvious reasons] I have noticed since circa my 60's they turn gelatinous state on the particular nerve canal after about three weeks, my latest one was gelatinous from the start on my right forearm, the pain is caused by the schwannoma on the nerve rubbing against the underneath of the skin, it is also affecting my grip in my right hand, the usual coffee mark on the outside of the skin near the "lump", I would guess about the size of of two grains of rice, quite noticeable on the right forearm. I have had about 20 of the 'so and so's' in my lifetime, two actually caused a serious reaction to the Astra Zeneca Vaccine, two about the size of peas on my prostate gland, causing a misdiagnosis of Prostate Cancer, a schwannoma about the size of a baked bean, started after I had a minor stroke in 2008, not operated until 2012 🙄 A complicated medical condition, not fully recognised as a medical condition until 1973 [I had had my first operation in 1970] There is Neurofibromatosis Type One and Type Two, I've got the "other" one Type Three. I now have my own personal specialist, now a good friend👌

[hunter5582]

You are a rare bird indeed. Having a Schwannomatosis, a Myeloproliferative Neoplasm, and other interesting medical idiosyncrasies is VERY rare. For reference, the rate of occurrence for SMARCB1 and LZTR1 Schwannomatosis is somewhere from 1/40,000 to 1/70,000. Add the odds of each of the other conditions, and you are mega-rare.

As you now, I am in somewhat that same statistical condition. I wish I could convert my medical odds into lottery winnings. I would be rich! 🤑 You might even beat my odds. You could be mega-wealthy!! 🤑🤑.

Keep up the good fight my friend.

[Adlon57 in reply to hunter5582]

Thanks Steve, I still wish I could actually meet somebody face to face, with the same condition, groan to groan, I am currently downsizing, as my GP calls me a "one off" I definitely believe I get preferential treatment now , which is good for the time I have left, but now I want to stretch my legs get away for a long break, although IF I do downsize the "proposed" extra 'coppers' might help to that end? lottery winnings🤑🤑if only.....