Help with peripheral Neoropathy

[Sheltie3]

I am currently having tests for Peripheral neuropathy - awaiting a MRI scan and Nerve conducting test. They have done all the blood tests and they have all come back normal. The doctor I seen has done lots of tests that proves there is a difference in my nerves above my knee to below and change between my wrist and elbow.

More recently I've started getting pain especially when I've walked a bit then feet feel like they go into a spasm/cramp.

I started with pins, needles and numbness in my feet that I first blamed on wearing higher shoes for my Sons wedding that I was used to, then within a few months it was in my finger going up my arms and I also get tingling in my face and Sometimes feels like my tongue is burnt.

I'm very interested in hearing from others how they are being treated and how you cope with this.

[Lizziesview]

Dear Sheltie3

I'm sorry to hear of your problems and hope the results of the tests will be positive.

I was diagnosed with PN around 3 years ago, but have had symptoms, of one sort and another, from childhood. They have concluded that mine is hereditary, but as my parents are no longer alive, it's impossible to investigate further.

The symptoms you describe sound very much like PN, but as I'm a 'victim' and not a doctor, I really wouldn't like to assume.

I felt very much alone after my diagnosis, but this site helped me greatly in understanding how this horrid condition effected others. Therefore, once you have your results, I and I'm sure lots of others, will be ready to support you and share our experiences.

Wishing you a positive outcome and thinking of you.

Lizzie x

[Marz]

The face tingling and tongue issue point to B12 deficiency. Was it tested ? - if so what was your result ? Anything under 500 can present with neurological symptoms.

b12d.org

b12deficiency.info/signs-an...

Scroll down in the above link for neurological symptoms. In the first link there is a questionnaire you can complete to check out your B12 Status.

[Pendleton]

Hi Sheltie. Sorry to hear that your symptoms are v similar to mine.My Dr says it's UMS i.e. unexplained medical symptoms but basically it's peripheral neuropathy or similar. I take pregabalin and paracetamol. These help a bit but I struggle. I played tennis 3 or 4 times a week about 4 years ago but now have to use a walking stick. I'm always in some pain but except when I first wake up it only affects my lower legs and feet. Once in bed it's even worse.

It's great to find other people to communicate with as it feels very lonely when I seem to be the only one with this condition. However I would wish it on anyone. Good luck and best wishes

Pendleton

[lottiejemma in reply to Pendleton]

I also Have P.N---- and when I go to bed at night ---- my toes suddenly feel like they have turned to Ice, yet before I get into bed, apart from the usual pain, can't balance and what not, My toes are just as they have been all day !!! Is that what you feel ?

[hoosier1956 in reply to lottiejemma]

I have the numbing type but, my feet feel really different when they are cold. I hope someone can help you , that has your type. 01/05/2021 Community South Hospital, All toes on my right foot were amputated. The last six months of treatment, I was connected to a KCI by 3M Wound Vac.