[susanjpullen]

Does anyone else have this problem?

I've had my test results back now (spinal tap, EMG, bloods, etc) and they are all clear (thank goodness).

The Neurologist says that we will probably never know what caused the nerve damage, but the nerves are beginning to heal themselves.

He's not sure to what degree they will heal.

The problem I am left with is caused by cold and by draughts. I get pains, ranging from mild through to debilitating.

This means that I have to use a walking stick (much better than before, when I was using a zimmer/wheelchair combo so I'm grateful for the fact I can walk at all).

The degree of limitation in walking varies from barely being able to to walking pretty easily, and all because of draughts and cold.

At home I sit in a sleeping bag, which I find helps. I find having a warm bath before bed helps too.

Has anyone else got this problem, and if so what ways have you found that help this?

Many thanks.

[Hope15]

Originally Posted by susanjpullen

Does anyone else have this problem?

I've had my test results back now (spinal tap, EMG, bloods, etc) and they are all clear (thank goodness).

The Neurologist says that we will probably never know what caused the nerve damage, but the nerves are beginning to heal themselves.

He's not sure to what degree they will heal.

The problem I am left with is caused by cold and by draughts. I get pains, ranging from mild through to debilitating.

This means that I have to use a walking stick (much better than before, when I was using a zimmer/wheelchair combo so I'm grateful for the fact I can walk at all).

The degree of limitation in walking varies from barely being able to to walking pretty easily, and all because of draughts and cold.

At home I sit in a sleeping bag, which I find helps. I find having a warm bath before bed helps too.

Has anyone else got this problem, and if so what ways have you found that help this?

Many thanks.

If I may ask a question? As I have said in other posts I am still very new to this and am curious as to how the neurologist knows your nerves are healing. Was this found out through the EMG? Thanks.

[susanjpullen]

Originally Posted by Hope15

If I may ask a question? As I have said in other posts I am still very new to this and am curious as to how the neurologist knows your nerves are healing. Was this found out through the EMG? Thanks.

The test results all came back negative (EMG, Spinal Tap and bloods)... when I went in for the tests I was using a zimmer frame/wheelchair combo to get around... and now am able to walk, albeit with a walking stick... sometimes more easily/more difficult than others.

He said this means that my nerves have started to heal themselves... he said this does happen... he's just not sure if I've got to the end of how much I will heal, or if I can heal completely.

Hope that answers it, and good luck yourself.

[Hope15]

[QUOTE=susanjpullen;464166]The test results all came back negative (EMG, Spinal Tap and bloods)... when I went in for the tests I was using a zimmer frame/wheelchair combo to get around... and now am able to walk, albeit with a walking stick... sometimes more easily/more difficult than others.

He said this means that my nerves have started to heal themselves... he said this does happen... he's just not sure if I've got to the end of how much I will heal, or if I can heal completely.

Hope that answers it, and good luck yourself.[/QUOTE

Thanks.....and best wishes to you too!

[dahlek]

That tests back it up is super!
Of course that doesn't make YOU feel a whole lot better in the interim.
Whatever all you are doing? Keep DOING!
I often think keeping FAITH in yourself as to this stuff won't 'get' you is part of the key. Should that faith involve religion or just self-perseverance is irrelevant - it is FAITH!
Plus the strength and persistence that it can give us to get either above or beyond the worst of it. The whole 'disease' can be totally wearing, for sure.
Hugs and hope always! 's - j

[sbvcrn]

Originally Posted by susanjpullen

Does anyone else have this problem?

I've had my test results back now (spinal tap, EMG, bloods, etc) and they are all clear (thank goodness).

The Neurologist says that we will probably never know what caused the nerve damage, but the nerves are beginning to heal themselves.

He's not sure to what degree they will heal.

The problem I am left with is caused by cold and by draughts. I get pains, ranging from mild through to debilitating.

This means that I have to use a walking stick (much better than before, when I was using a zimmer/wheelchair combo so I'm grateful for the fact I can walk at all).

The degree of limitation in walking varies from barely being able to to walking pretty easily, and all because of draughts and cold.

At home I sit in a sleeping bag, which I find helps. I find having a warm bath before bed helps too.

Has anyone else got this problem, and if so what ways have you found that help this?

Many thanks.

I have something similar. So far no muscular weakness but I do have "burning cold"...if that makes any sense. All of my tests including skin biopsy were normal (so what is going on). Right now I having burning feet, legs, hands and arms and yet am really cold. I have four lays on and a blanket with thermostate at 74 (hubby cant stand it any warmer). I, too, love a really warm to hot bath. Somehow the hot water (not really that hot) seems to decrease the burning with decrease in all symptoms. I have no idea what is wrong with me (all thyroid tests fine). Some days are worse than others (like today). I feel like mine is slowly getting worse. Also, do you find you cant stand many fabrics touching your skin? I find I have to wear some underwear (even though it is silky to touch) inside out as that leaves the rougher edge outside and the soft side next to my skin. Fortunately, I can still put regular clothes (nothing wool or even close) on top so it is not obvious!

[Jomar]

some of the sensitivity that you describe almost sounds like RSD {also called CRPS or causaulgia {sp}}

sensitivity to the drafts and to the fabrics.

You might want to visit or RSD forum for more information -
http://neurotalk.psychcentral.com/forum21.html

check the sticky thread there for rsd details -
http://neurotalk.psychcentral.com/thread247.html

[susanjpullen]

Originally Posted by dahlek

That tests back it up is super!
Of course that doesn't make YOU feel a whole lot better in the interim.
Whatever all you are doing? Keep DOING!
I often think keeping FAITH in yourself as to this stuff won't 'get' you is part of the key. Should that faith involve religion or just self-perseverance is irrelevant - it is FAITH!
Plus the strength and persistence that it can give us to get either above or beyond the worst of it. The whole 'disease' can be totally wearing, for sure.
Hugs and hope always! 's - j

Hi there

You have been so supportive... when I first came on the forum I was feeling close to despair, and your message really kept me going. This disease is very wearing I would agree totally. I'd never realised I'd had it so good, so to speak, and it has made me far more appreciative of any good moments.

Thank you so much for all your help.

What I've been doing has been:
1) Changed my diet slightly (less meat/more veg)
2) Taken a good vitamin and mineral supplement
3) Used NLP/Self Hypnosis to manage pain and visualise as fully as possible a time when this is just a memory
4) One of my friends is a Meta Medicine Practitioner, and they did a couple of sessions on me. This led me to find out any emotional issues I may have had that might be adding to any problems, and then I used NLP to clear those issues.

Thank you so much and I will keep on going and update if anything new happens.

Sue

[susanjpullen]

Originally Posted by sbvcrn

I have something similar. So far no muscular weakness but I do have "burning cold"...if that makes any sense. All of my tests including skin biopsy were normal (so what is going on). Right now I having burning feet, legs, hands and arms and yet am really cold. I have four lays on and a blanket with thermostate at 74 (hubby cant stand it any warmer). I, too, love a really warm to hot bath. Somehow the hot water (not really that hot) seems to decrease the burning with decrease in all symptoms. I have no idea what is wrong with me (all thyroid tests fine). Some days are worse than others (like today). I feel like mine is slowly getting worse. Also, do you find you cant stand many fabrics touching your skin? I find I have to wear some underwear (even though it is silky to touch) inside out as that leaves the rougher edge outside and the soft side next to my skin. Fortunately, I can still put regular clothes (nothing wool or even close) on top so it is not obvious!

Yes I totally find that with fabrics!!! I get a burning cold... I've described it as an acid burning... or like the time I found myself in Vienna and it was minus 10 degrees, and I had on thick boots and a thick coat... but there was a gap between the boots and the coat. When I got back to my room, my legs where the gap was were bright red... burning... but freezing cold... it is so like that.

I find that I'm having to wear thermal leggings and leg warmers under my trousers... and sit in a sleeping bag in the living room.

I've got an overactive thyroid, but they've said it is not related to that... I'm due to get 'zapped' (radio-iodine treatment) within the next 3 to 4 months, and then it will take about 6 to 8 months for that to work... but they've said that won't have an affect on my leg problems.

Sometimes I feel like I'd like to live in a nice, warm bath... its so enjoyable to have the freedom away from the symptoms for a while.

Good luck with finding out what's causing yours... they've said they don't know what mine is and won't be able to find out... and there is a chance that it may one day disappear by itself. I hope yours does too.

[susanjpullen]

Originally Posted by Jo*mar

some of the sensitivity that you describe almost sounds like RSD {also called CRPS or causaulgia {sp}}

sensitivity to the drafts and to the fabrics.

You might want to visit or RSD forum for more information -
http://neurotalk.psychcentral.com/forum21.html

check the sticky thread there for rsd details -
http://neurotalk.psychcentral.com/thread247.html

Thank you so much for this. I've got an appointment with my neurologist next month, and I will ask them whether it could be RSD/CRPS/causaulgia.

In the meantime I will look at all the links.

Sue