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Peripheral Neuropathy

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Hi,

I know in the past I have read about someone having peripheral neuropathy. I went to a neurologist last week and he thinks that I have it. I can't get the nerve testing done until my stress fracture in my foot heals. I was just curious. I hope that everybody had a happy day yesterday.

Nan

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Hi, Nan. Glad you are getting this sorted with your neurologist. Let us know what the testing shows. This Mayo article on Peripheral Neuropathy is very thorough. The last section on self-care is particularly helpful.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Nan

I've had peripheral neuropathy for a number of years, however I had it long before any hint of SSc and the opinion is that it is due to a back problem (spondylolithesis)- and I'm sure that is the case as when my back is OK have no numbness and when it is playing up it returns.

Lizzie

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Hi Nan, I was told I have this in my foot and leg. I get numbness and pain all the way down. My Dr. put me on elavil and that helps more than any thing else for pain. I also have arthritis in that hip, knee, and sacroiliac joint so I'm not sure where it starts.

Hugs, Piper

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Hi Nan,

 

I have a general peripheral neuropathy which is mild. At times I will get numb in different areas but the only pain I have had with it is in the toes and fingers.I had the tests EMG , nerve conduction tests done on all limbs. I hope you don't have alot of pain with yours and I think it affects my balance sometimes but not a huge bother. I hope yours stays mild too. Susie54

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Hi Nam:

 

About a year ago I went to the Neuro Dr. to get test for Peripheral neuropathy. The doctor told me I don't have it but I get the numbness and the tingling on my arms, hands and feet, I also get pain on my arms. I don't know if the test were wrong or what and I don't want to try those tests again. If you think you have it but the test come back negative, and it is very painfull maybe you would want to try again.

Have a great day,

 

Ani

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I developed peripheral neuropathy in my feet after an autologous stem cell transplant to treat lymphoma. It was supposed to go away. The doctor seemed to think that the scleroderma was probably why it stayed.

 

Neurontin and other pain meds seem to help. Never got much help from Elavil. It tends to get worse (goes from benign numbness to pain) when I eat something very sugary, such as a bowl of ice cream.

 

It seems better when I take my vitamin supplements - but I have not pinned it down as to which supplement it might be. Vitamin B6 is said by some (including my oncologist) to help. Lack of vitamin B12 is sometimes said to cause neuropathy.

 

Craig

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This is how my disease started! Back in July, 2006, my hands and feet went dead and it took over a year for it develop further and then finally the diagnosis of the sclero, sjogren's, raynaud's and mixed connective tissue disorder.

 

Mine will not only go numb but I also get break-out nerve pain where it feels like someone is stabbing you from the inside. Hurts like crazy and you never know when you will feel it.

 

The neuropathy is terrible too in that my feet go so numb that I have nerve damage up to my knees now.

 

Let me know if you have any questions as I have really had the tests and tests and doctor upon doctor on this.

 

Peggy

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I think Craig said alot of good things. I have taken Vitamin B complex in high doses for four years now and it really did make a difference on the numbness. I was low. Also, the neurotin is a good pain killer for that. Susie54

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Thanks for all of the responses. It will be interesting to see if I do have it. I have to wait for my stress fracture to heal. I went to the dr. yesterday and got a new soft cast. He hopes that it will heal by January.

Stay warm!

Nan

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