Diabetes and HNPP: Hi I have just been... - Charcot-Marie-Too...

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Diabetes and HNPP

Pam49 profile image
7 Replies

Hi

I have just been diagnosed with type 2 diabetes (Not Impressed about it) The nurse told me that sometimes your feet are affected with numbness! Brilliant! I told her that having HNPP my feet are numb quite a bit, so how will I know if it's my HNPP or my diabetes? Needless to say she didn't answer; to be honest I think it's because she doesn't understand this disease! (Not many medical staff do!)

So I would like to ask if diabetes will make my disease any worse or my disease make my diabetes worse?

My HNPP is getting slowly worse and at the moment I am really suffering with my sciatic nerve in my right leg, I cannot sleep on my side or lie on my side and end up sleeping flat on my back which doesn't help my back at all,

Does anyone know of any medication that might help as after looking at the amount of painkillers I take, my GP said that there is nothing else he can give me so he increased my Tramadol?

I take Dihyrocodeine, tramadol, gasbapentin,piriton(as tramadol make me itch!), so if anyone knows of any other painkiller that will enable me to be pain free for a short while could you let me know. A good nights sleep is not too much to ask!

Also I do take other medication for various things ie, cholesterol, blood pressure, diabetes.

any positive response will be GREATLY appreciated.

Pam.

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7 Replies
Lickylicky profile image
Lickylicky

I have peripheral neuropathy and take nortriptyline(pamelor is the generic name). Its an older drug that has been forgotten about. It can cause tachycardia (too fast heart rate.) this drug works and so does benfotiamine ( benfotiamine.org) i only take one 150 mg of benfotiamiine a day after hearing that it speeds the growth of tumors in lab mice. I also take 2 25 mgs of the nortiptyline once a day and for me this works oretty well. I went gluten free for arthritic like pain in my hands and found it helped lessen my nerve pain in my feet. Good luck hope this helps

Pam49 profile image
Pam49 in reply to Lickylicky

Hi Thanks for your reply but as the drug seems to increase the heart then I will leave it alone as I also try my best to look after my dad as he has chronic heart failure, so one in the family is enough, but than ks so much for your advice.

Pam

TB5598 profile image
TB5598

Hi Pam49 not knowing what HNPP is but my recommendation is to get your doctor to refer you back/to a chiropodist, who will be able to help.

John1945 profile image
John1945 in reply to TB5598

Hi Pam......

The only medical professional that is fully qualified, and can diagnose Cmt , and its various sub-types, is a Consultant Neurologist ! ! !

John1945 profile image
John1945 in reply to John1945

Hello to TB5598.....

Oop's !

So sorry, the correct medical professional qualified, to diagnose HNPP is a Consultant Neurologist, and certainly not a Podiatrist!

HNPP - Defination:

Hereditary Neuropathy with liability to Pressure Palsies or. HNPP is a slowly progressive, HEREDITARY, neuromuscular disorder which makes each individual very susceptible to "Peripheral-Nerves", injury from pressure, stretch or, repetitive use:

When injured, or inherited the peripherel nerves demyelinate, or lose their insulating covering, also called or sheath, which is a"wax-like" substance called MYELIN, which insulates, and"wraps-around" your 'peripheral nerves, and should insulate, your electrical "brain-to-muscles-wave-signals":

This then causes episodes of numbness, and weakness in the injured area, which are referred to as the ‘pressure palsies'. These episodes can be mild, and more of a nuisance than anything, or so severe almost all movement in the affected limb(s) is impossible. They may last several minutes to months. Because the symptoms can come and go, and most NHS Neurologists may have not yet heard of, or seen a single case of HNPP, it can be very difficult, and lengthy process to be diagnosed !

Get to your G.P. and request them to refer you to a Consultant Neurologist for the correct tests, such as Physical Examination / Normal reflexes test / Nerve conduction (speed) test / Blood tests, (usually sent to a specialist laboratory, within a University Hospital, to confirm Cmt, and its 'Sub-Type', (very expensive to NHS Health Board) !

TB5598 profile image
TB5598

Thx john1945 as I don't know what was on my mind at the time. Again thx for your assistance in this matter. Hi pam49 John is quite correct with his recommendation and I must apologies for the delay in the reply as I have only just got to read this message.

18/8/14

lexy1973 profile image
lexy1973

I have HNPP along with fibro and I take pregabalin x

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