Can sleep only on my stomach with feet dangling off the pillow while I'm on my stomach does this sound like CMT or HNPP?

[Lickylicky]

What I mean is I can have no pressure on either leg in order for nerves not to be cut off so I put the pillow below my knees and lay on my stomach

[John1945]

Hello to Lickylicky.....

I would sugest that you request your own GP to refer you to a Consultant Neurologist, who is the only medical professional who is 'fully' qualified, and could diagnose, and provide you with the answers to your questions:

You also do not tell us, "what leads you to suspect" that you may have Cmt ?

Does any other members of your family have Cmt, and its symptons ?

Remember at present approx only 30,000 registered cases exist in the UK, which has a population of, approx 62 million ?

Whilst Cmt is not a "rare" neurological disease, many medical professionals may never see a 'single' case of Cmt in their entire medical career:

Your description does not appear to be a muscular defect, which are the classic signs of Cmt:

Do you have clumbsiness (since childhood) / high arches (pes-cavus) / thin ankles / balance difficulties / walking 'gait' problems / walk on the outside of your feet / muscular fatigue etc. ?

However, whilst I personally have 'inherited' (born-with) Cmt Type 1a, which basically means the your brains electrical stimulation signals to your lower limb muscles, and are transmitted, and are sent via your 'sensory' (touch/feelings-nerves-to>your brain), and your 'motor' (command-nerves->brain back to muscles) etc, are much reduced in strength >(velocity) due to defective the MYELIN sheathing which "wraps-around", and insulates your peripheral nervous system, is defective, and it 'LEAK's', with a corresponding loss/reduced/weak, electrical wave signal stimulation/strength, being received at your extremities muscle groups:

Therefore, over a very long period time (your-lifespan), your lower limb(s) muscles will continue to 'waste-away', which is also called Peronal Muscular Atrophy:

Also, I have Diabetes Type 2, which normally attacks your lower limbs (long) nerves, and is causing me to have severe 'burning sensations' in my feet/toes, and fingers, including loss of sensations whilst I am sleeping:

You must request your GP to arrange for further medical investigations, as only a neurologist could 'rule-out' Cmt by a blood test, and also arrange for a 'Nerve-Conduction-Study', (uncomfortable) which can actually measure the exact speed (velocity), of your 'Peripheral-Nerve' signals from your 'brain-to-lower-limbs-muscles':

Normally, Cmt normally effect's your bodies 'peripheral' nerves, (nerves positioned just under your skins surface), but are sited outwith your main 'central nervous system' which is contained within your brain/spinal cord:

Nerve pain(s), in your hands/feet/legs, is usually due to Diabetes Type 2:

Do not give up ! you must insist on further tests to, eliminate, or identify, and confirm if you indeed actually have Charcot Marie Tooth Disease (Cmt) and what type ? ? ?

Best of luck.....

John (Glasgow).....

[Lickylicky]

Thank you Jon I appreciate and I feel badly because you spent a lot of time explaining what I already know but that's because I didn't tell you that I've already seen the neurologist to told me I have CMT and I've already had the EMG studies done the only reason I haven't done the blood test is because the cost is so high although I know I need to get confirmation that it is indeed CMT because there are many medications that I can't take if I am ever put in the hospital or need to take specific drugs. The reason I'm asking about a diagnosis of HNPP is because I've never heard anybody with CMT who can only sleep on their stomach or their back and so I was wondering if this sounds like CMT if there was anybody else who has the same issue or if this was an issue that people with HNPP have .I have read that people are sometimes misdiagnosed with CMT when in fact they have HNPP. I am wondering if I am one of those people who possibly has HNPP instead of CMT so that's why I'm asking this question about sleeping and pressure on my feet so I'm sorry to take so much of your time and you went quite a lot of hoops to explain what I already knew and my apologies I live in the United States. This is a great forum and I appreciate all the input that I get from others and thank you again John. Either way I'm aware of that I need to get a definitive diagnosis.

[John1945]

Hello once again to 'Lickylicky'....

I am most surprised that 'YOU' are concerned over the financial costs, that are associated with a specilised 'blood'-test', that would confirm an exact diagnosis to your Neurologist, and confirm the exact type of Cmt you have ?

Yes, I am fully aware that your blood samples will be sent to a specialist laboratory, usually within a 'University-Hospital', however, you or your husband, or partner, have already paid in full your National Insurance Contributions, and are most certainly entitled to all the medical services/ resources available within the NHS:

Do not let any NHS Consultant "fob-you-off' on the grounds of medical financial costs ?

My own Cmt Type 1A was inherited from my father, 69 years ago:

Over 'many-many' years, I have never heard of any Cmt sufferer's who need to sleep on their stomach as a result of having CMT ???

Only a NHS Consultant Neurologist, can give you a definitive diagnosis of you symptoms, and your prognosis>(outlook / way / forward) !

[Lickylicky in reply to John1945]

hi John thank you again for replying I just wanted to let you know that I was confused when you mentioned about NHS and then I realize that you missed in my previous letter that I'm from the United States and not the United Kingdom so our healthcare system is obviously different but yeah for me to have from my CMT tested genetically I would pay between two and three grand so that's probably why you were confused is you just missed it when I had stated that I was live in the United States so just wanted to clarify that thank you John