peripheral neuropathy: hi i have been... - Charcot-Marie-Too...

Charcot-Marie-Tooth UK

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peripheral neuropathy

sleepysammy6 profile image
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hi i have been told i have peripheral nueropathy has any one else got it i am being tested for diabetes an other thing as i have balance problems and giddiness numbness in the feet and hands and not very good reflexes in my legs has any one else got this i live near Margate and wonder is there any groups for this sort of thing as i have just moved here and it would help to know people with similar conditions

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sleepysammy6
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10 Replies
steveshawx profile image
steveshawx

Unfortunately peripheral neuropathy comes within the territory of CMT and affects most sufferers in one way or another in their upper and / or lower limbs. Having diabetes is a separate disease, and that too can give peripheral neuropathy symptoms in the same areas. Good control of blood sugars can alleviate the lack of sensations, but with CMT these sensations (or lack of them) stay and vary (medics refer to them as a stocking and glove effect). I would get an appointment with a consultant neurologist and get a nerve conduction test to establish CMT, and go with the the blood tests and medications/ diet regime if you also (like me) have diabetes. There are local support groups for CMT across the country - try the website cmt.org.uk to access support in your area. Good luck.

John1945 profile image
John1945

Hello to sleepysammy6

You did not tell us which medical professional, told you that you have 'peripheral-neuropathy' ?

Yes ! most certainly Yes ! In the UK there are thousands of people, who have been diagnosed with peripheral neuropathy:

At the "last-count" there were also 30,000 plus registered cases of Cmt sufferers in the UK:

Persons diagnosed with, Diabetes Type 1, or Diabetes Type 2, can also suffer this most uncomfortable "side-efect" of Diabetes:

Best of luck....

John....

(Glasgow)

Jazzyjoan profile image
Jazzyjoan

Hi Sleepysammy, I have Charcot Marie Tooth (CMT) which causes peripheral neuropathy and all the symptoms you describe. There is a support group in Kent run by Diana Turner, tel. 0845 872 9529, email diana@cmtuk.org.uk. Hope this helps. Joan

mason profile image
mason

hi i have perifual neuropathy caused by malnutrition its agony to walk i loose my balance its like a stabbing burning pain i alsi get bad cramps i also have fibromyalgia ,do you use a whelchair ,

fkcough profile image
fkcough

Sorry I do not live in your area but have Peripheral N and it has blighted my life! The DVLA has made me surrender my driving licence an I can't even get a G.P to talk to me about it. It's like a catch 22 situation.

Amanita profile image
Amanita in reply to fkcough

Hi, fkcough,

Has the DVLA sent you a medical form to reapply for your driving licence?

Your GP may well refuse to get involved - as mine pointed out: the DVLA Medical Group employs their own doctors (including neurologists) and it is their job to determine whether you can drive. The DVLA may tell you to go to your GP for a test (they send him the form and it's a cursory tick-box examination) or require you to go for other tests.

Usually you can go on driving while the DVLA has your licence ( if you have not surrendered it for infringement of any driving law or been told not to drive) - while they have your renewal application and until it expires.

Unfortunately the DVLA Medical Group seems only too happy to leave you in limbo for weeks or months - or even longer- after your licence has expired, while they are considering your application. They will quote you section 88 of the Road Traffic Act ad nauseam but that will only permit you to continue driving if your GP says it's OK - but then your GP refers you back to the DVLA. As you say Catch 22. It is a completely disgraceful way to treat people with disabilities who depend on driving for going about their daily lives.

gunner profile image
gunner in reply to Amanita

Hi I have CMT and had to tell Dvla who did a investigation into me and my medical history which took I think a couple of months, but it really came down to did my GP have any reason to say I should not drive. And there was none, but I will say that driving a automatic is much better and safer as since I went over to auto I've found that I haven't had the problems that happened to be with a manual, this was B4 I was aware of my CMT. What there DVLA do this is restrict your license but at least you are able to carry on driving. So as long as in your own honest opinion you are not a problem to other drivers then you should be able to carry on driving, I mean I've seen someone driving who had no arms which blew my mind but if he can still drive why can't you??.

Amanita profile image
Amanita in reply to gunner

Hi, Gunner,

The problem comes when you reapply for your licence after the 3 years, and send it with the forms to the DVLA 10 weeks or more before it expires, as required by them.

They can then take a very long time indeed to make up their minds as to whether to renew your licence - during which time your licence expires.

If you are confident your medical condition will not affect the standard of your driving, but you are involved in an accident (maybe the other person's fault) it will not be good if you can't produce your licence - and then it turns out it has expired, but you have not had the green light from your GP or neurologist.

Suppose it depends on whether your GP or Neurologist unlike mine (with them it was a matter of principle, not opinion), actually say they believe you are safe to drive - or if they don't - whether you are prepared to take a risk.

For the record - I was nearing the completion of an Advanced Driving course when my licence expired, and had to give up driving for some weeks until it was renewed.

beachwine profile image
beachwine in reply to fkcough

Instead of talking to your G.P. make an appointment with a neurologist. He or she can examine/test you for Charcot. Good luck in finding the right doctor.

spabbygirl profile image
spabbygirl

Peripheral neuropathy just tells you that the nerves on our periphery - hands and feet - are faulty it just describes the condition in medical language, it doesn't tell you why but one reason could be Charcot Marie tooth disease where the outer coating of the long nerves is faulty so you can't use hands/feet properly and they give funny symptoms like pins & needles. a neurologist can confirm why you have these problems after tests.

Good luck!!

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