Hi I went to Orthotics this week in the hope of having a splint fitted for my elbow; which the doctor says is Tennis Elbow?? Personally I think it is my HNPP but then I am a sufferer and my GP isn't! however after an assessment with the nurse she decided I CAN'T have a splint/brace fitted because of the pressure on my skin! As my nerves feel like they are on the surface of my skin at the moment she decided not to let me have one, yet again I come across someone in the medical profession that doesn't know anything about HNPP! so my question is: Has anyone had a splint/brace fitted or been told you cannot have one? i was very annoyed with my GP as if he had taken a little time to read about HNPP,
he himself would have known I couldn't have one fitted and saved me the trek to the centre and an appointment that someone else could have had! Why do GP's not take time out to investigate our condition instead of just pretending they know what we have?
So now I am still in pain even though I had an injection the day before but I think the needle went in the wrong place this time as it has made no difference whatsoever! Anyone any idea's as to how I can aleviate the pain in my elbows when I go to bed?
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Pam49
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I did have elbow surgery but not a splint as such. I do however agree that most GPs know little about this condition, I find it very odd because I am often told it is the most common hereditary disease in the world ? My surgery was to increase blood flow, it took 6 minutes to open, drill a few holes in the muscle and close. No pain since, that was 5 years ago.
Hello Pam49..... Can you advise me what does HNPP refer to ?
Like yourself I suffer from "Tennis Elbow" : It responds very well to Cortisone Injected into the inflamed tendon: However, I have noticed that my G.P.'s are now being more reluctant to do this procedure, as they are now stating that an injection is "an invasive" procedure, and I should attend a hospital following their referral:
A little tip from my Senior Partner G.P. is to put you painful arm behind your back, at right angles: This then (1) Stabilizes your arm/elbow: (2) The elbow, and the tendon are in the open/correct position for the injection: (3) You can't see what's going on !
I have C.M.T. (Type 1A) which I inherited from my late father: You are suffering the same frustrations as all people who have C.M.T.: Most health professionals have never seen, or heard off C.M.T. they may only see one case in their medical employment: So do not expect every G.P./ Nurse to have knowledge of this disease: YOU yourself must read up on this condition and "spread the word" so that all health professionals are aware of C.M.T.:
If you have not done so, join C.M.T. U.K. (Bournemouth): Their secretary Karen Butcher, has a wealth of knowledge, and is most approachable: This wonderful organisation provides professionally designed publications / leaflets / posters / local groups / latest medical, and state benefits information etc: Their book "Living with C.M.T" is the "bible" on this condition, as is an essential "must-have" for all !
Ah thank you so much for that, John - my head is even larger than before!!!!!!!
But we do work hard to give you all as much information as we've amassed over the years! And after 25 years (I've been involved for 22!) that's quite considerable.
As far as awareness is concerned, you're right - the only way we can ever get through to less-than-knowledgable professionals is to become knowledgeable ourselves and then spread the word. We can only do so much as an organisation - we need your help to be successful ..... eventually!!!
Unfortunately, my knowledge of HNPP is limited to what we've cut and pasted from other websites. We only include it under our remit because it's the genetic opposite of CMT 1a - a deletion of that PMP22 gene, rather than an extra one!
We're having a meeting with our advisers in February, and I think a short session on HNPP is definitely called for! Perhaps that'll fill the gaps in my knowledge.
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