hereditary neuropathy

[Gigforgig]

I was diagnosed ten years ago. Started with pins and needles/numbness in the hands and feet. Has since travelled up the legs to the groin and up my arms into the shoulders plus lower jaw. I get shooting pains almost like a mini electric shocks that can mainly be in the hands and feet and sometimes in the legs. I take 150mg of pregabalin mornings, 200mg evenings plus 10mg of amitriptalin at night - all of which helps to ease the pain Also take B12. Has anyone experience burning pains particularly when in bed whereby where ever your body touches the mattress there is a burning sensation. Other than the neuropathy I enjoy good health. Gigforgig

[Lizziesview]

Hello gigforgig

I'm sorry to hear of your pain.

I also have, what they think is, hereditary peripheral neuropathy and yes, I also have the burning sensations, particularly at night.

Unlike you, mine started in one foot, which has now badly 'dropped and has spread upwards and across, to the other leg, arms and hands.

The disease has spread rapidly in the last 2 years. I'm on 300mg Pregabalin, with Codeine throughout the day, but there are some times, (like last night)! that it doesn't contain the pain.

The thing that I find most astonishing, is that the symptoms can vary hugely from day to day, or even hour by hour - burning, freezing, electric shocks, stabbing pains, etc., etc. However, although I'd not wish this on my worst enemy, it's a comfort to know that someone else understands what I'm going through.

I hope that you are also able to get comfort from the site and that the doctors are able to manage your pain effectively.

Warm wishes and hugs

Lizzie x

[Gigforgig in reply to Lizziesview]

Hi Lizzie Thank you for your lovely response, it is much appreciated knowing a fellow sufferer. I take 150mg Pregabalin mornings and 200mg early evening. Having recently had the evening dose increased has really helped. Are your feet usually cold regardless of the weather? When I go to bed my feet are usually quite cold (like blocks sometimes) and during the night I can wake up and my feet feel as though they are on fire, so much so I have to stick them outside the bedclothes to cool off! I have had the test for circulation to my feet and it is fine. I suppose it is comforting to know that the neuropathy is not life threatening - just a pain! Do you have problems with your balance?

Take care and lots of hugs

Gig x

[Lizziesview in reply to Gigforgig]

Hello Gig

Yes, my feet and legs can be freezing and burning within a short space of time! Also I often have one leg and foot hot and the other cold (not always the same sides either)!

The unbearable pain I experience, is usually along the outer side of my lower leg, it is excruciating when it comes and makes me feel ill.

My walking is getting extremely difficult now and it's mostly due to my balance, or should I say, "lack of balance". It's declining rapidly and I'm really quite frightened as I can see a wheelchair fast approaching, at this rate.

I would love to know some of the symptoms which you're experiencing, to 'compare notes'.

Take care and keep your chin up!

Lizzie x

[Gigforgig in reply to Lizziesview]

Hi Lizzie

I also experience sharp pains on the outer side of my lower legs and outer thighs. I think it follows the route of the main nerve down the leg. The last few days I have had pains on the outer side of my ankles. I am staying positive and not thinking too much of the future. Some days I am great and walking really well - some days it is a little slower. Even so, I am not pricing up the cost of a wheelchair or motor scooter. Waiting until a turbo charged scooter is available or a motorised simmer! One question - do you experience a numb bottom regardless of what you sit on?

Take care and keep positive.

Hugs Gig x

[Lizziesview in reply to Gigforgig]

Hi Gig,

I love your positive attitude and you're quite right! I'm focused 97% of the time, but when I've experienced a lot of pain, or have seen periods of rapid decline, I get a bit shaky 😦

Yes, a numb bum seems par for the course ! I think it's actually due to the sciatic nerve, as it runs down the backs of my thighs too; I also get sharp pain in my ankles and through my feet.

Are you in the USA or the UK?

Your symptoms seem to be very much like mine; do you use a walking stick? I have to for my drop foot and lack of balance, (I'd love to here about yours too, - balance - if you have time please).

Stay strong!

Hugs back to you

Lizzie x

[Gigforgig in reply to Lizziesview]

Hi Lizzie I am in the UK - Bristol to be exact. Where are you? Not using a stick although I do have a habit of tripping up - fortunately so far have not landed on the deck! One tends to lose one's dignity when sprawled on the ground! Some days my balance is quite good - other days can be a bit iffy hence tripping up. Do you get pains in your shoulders? I read somewhere that another symptom is muscle wastage. Do you know anything about this? My legs are definitely weaker than they used to be.

Hold in there Lizzie

Lots of hugs

Gina x

[Lizziesview in reply to Gigforgig]

Hi Gina

Great to hear from you. We live near to Reading, so not terribly far from you; perhaps we could meet halfway, sometime in the future?

We're now away for several weeks, house and dog sitting for a friend in Langkawi, (an island off Malaysia). It's very beautiful, we're very lucky. We've a pool and so I am doing my aqua neurological exercises every day. Fingers crossed, they'll help.

I do get pains in my shoulders, but I think that a lot of it is due to osteoarthritis, although the neuropathy has progressed to arms and hands, so no doubt, it's causing some of the pain.

Anyway, we'll keep smiling and fighting it together.

Take good care of yourself, Gina.

Love and hugs

Lizzie xx

[Gigforgig in reply to Lizziesview]

Hi Lizzie

I hope you are enjoying your break in Malaysia and doing your aqua neurological exercises every day. Not sure what 'aqua neurological exercises' are - perhaps you could explain it to me. It could help me as I am a water baby at heart. Yes it would be great to meet up with you sometime soon. Meanwhile, soak up the sun which is great for feeling good.

Take care

Love and hugs

Gina xx

[Lizziesview in reply to Gigforgig]

Hi Gina

I thought I'd just catch up quickly. I'm still in Malaysia and haven't forgotten about our correspondence. It's great here and the daily pool exercises have definitely helped. Whether it's the warmth, or not, my pain has certainly subsided; it does come occasionally, but as yet, hasn't lingered. I've hardly touched the Codeine, or even Paracetamol since I've been here , although I wouldnt fancy doing away with the Pregabalin!

So there's our answer - we have to all move to somewhere hot and exotic!!

I do hope you've had a good few weeks, pain-wise and I look forward to catching up in the not too distant future.

Love and sunny hugs

Lizzie xx

[Gigforgig in reply to Lizziesview]

Hi Lizzie

Funny you should say the heat and the sun helps. I have experienced the same whilst away on holiday. I am off to Morocco soon for 3 weeks and can't wait to soak up the sun - I always feel much better and certainly more mobile especially after a good swim. I might even indulge in aqua -arobics!

The weather here could be better but at least we are not experiencing the horrendous storms around Cuba etc.

Take care

Love and damp hugs

Gina xx

[Lizziesview in reply to Gigforgig]

Have a fabulous holiday - lots of aqua exercises!

We've had severe weather, tailend of tornados and hurricans sweeping across Asia - our house hit by lightening (all ok); severe floods, (padi field is a lake, literally, locals are fishing in it!) and really strong winds - but it's warm and my legs are okay, hahaha!

'Catch up in a few weeks and have the best of times.

Love and even damper hugs!

Lizzie xx

[Lizziesview in reply to Gigforgig]

Hi Gina

Well, I guess you're back from Morroco, I hope you had a brilliant time. Did the heat help you at all?

We'll have been home for almost 3 weeks now and it's so sad, as already our holiday is a distant memory.

I'd love to correspond with you, but obviously don't want my details, (nor yours), put on a public site. Any ideas of how to make it private?

I hope you're well and the pain's under control.

Love and hugs

Lizzie xx

[Judmilla]

How did they determine that it is hereditary? Just family history? Or is there some kind of DNA testing that determined it? Just curious. None of my blood relatives had this, but my stepfather did. (Steppies don't count).

[Lizziesview in reply to Judmilla]

A few reasons... not diabetic or drink related, but my maternal grandmother was lame, although my mother isn't alive to confirm the reason. Also when I was a child i had excruciating cramps in my legs at night, so bad that I was unable to go to school the following day. My consultant confirmed that it was the start of the neuropathy.

[Gigforgig in reply to Judmilla]

Hi Judmila

Lizzie is correct with her reasons - if it is not diabetic or alcohol related it can only be hereditary as diagnosed by my consultant 10 years ago after numerous tests. Initially I was treated for carpel tunnel syndrome. I had both hands operated on three times each plus the nerve in my elbow moved out of the canal. When the symptoms persisted I was referred to a Neurologist who finally confirmed Hereditary Neuropathy.

Hope that helps

Gina

[Marz]

How much B12 do you take ? Do you have B12 deficiency ? There are Guidelines for B12 & Folate Deficiency your GP should follow - that includes B12 injections every other day until symptoms subside.

It is also advised to take a good B Complex as B12 works with Folate /Folic Acid in the body.

Happy to post more information if needed. 😊

[bedfordlodgers1]

I have been really interested in the letters about the peripheral neuropathy. I have been to see a neurologist who thinks it is nerve damage from rheumatoid arthritis. It has also caused nystagmus. I get really cold fingers which cause pain but they can also get hot. having another brain scan just to make sure all is well. I am so glad everyone seems so positive, I just wonder what lies ahead. I do have B12 injections every 3 months.