NNPP?Hereditary Neuropathy with liability to Pressure Palsies.

[KimSawyer]

Anyone heard of this???? Seems that this can overlap with fibromyalgia and is very hereditary... makes for interesting reading, and unlike fibromyalgia can be diagnosed with a blood test .

[Hidden]

Fibro does come off the back of other illness, for some it comes from a trauma.

[sleepytink]

do you have a link to the study or article please

[maddonna in reply to sleepytink]

ghr.nlm.nih.gov/condition/h...

[trytobehappytalking]

Interesting to know about the this Kim, thank you.

I researched into this after reading your script and compared with my symptoms eg: "Hereditary neuropathy with liability to pressure palsies is characterized by recurrent episodes of numbness, tingling, and loss of muscle function (palsy) in the region associated with the affected nerve, usually an arm, hand, leg, or foot. The most common problem sites involve nerves in the wrists, elbows, and knees. The fingers, shoulders, hands, feet, and scalp can also be affected. Many people with this disorder experience carpal tunnel syndrome, which occurs when a nerve in the wrist (the median nerve) is involved. Carpal tunnel syndrome is characterized by numbness, tingling, and weakness in the hand and fingers. An episode in the hand may affect fine motor activities such as writing, opening jars, and fastening buttons".

What is the blood test that I should request my GP to do or is it just the rheumatologist can do the test?

Many thanks

[KimSawyer in reply to trytobehappytalking]

Hi,

Yes, it did make for interesting reading, and also triggered a few things for me, some of my symptoms not seemingly fibro related. The blood test needed is

TMP22 gene test, whether we will get it could be another matter , let me know how you get on

[trytobehappytalking in reply to KimSawyer]

Thank you, Kim for your prompt response. Is this test available on the NHS and can the GP request or is it the Rheumatologist

Hira x

[KimSawyer in reply to trytobehappytalking]

I’m not 100% sure, I think it is a NHS test, but whether your GP will refer you I’m not sure. These days they have so many loopholes and get outs

[trytobehappytalking]

Yes, totally agree with you. Have you had a need to do this test?

[KimSawyer in reply to trytobehappytalking]

I’ve only just found out myself about it, a nephew has just been diagnosed with it, and his mother, my sister is now having tests herself .... his consultant said how hereditary it is and she thought I should know, my daughter has fibro too, so I will be asking for this test if only to eliminate it

[trytobehappytalking]

Thank you, that is interesting. Please do let me know how your sister gets on and yourself too. I will ask my GP too and will update you. Are you member of a support group whereby you all meet in person

[Midori]

Wow! that answers why I have patriotic feet and hands (red, white and blue), amongst other things.