NeuroTalk Support Groups - Levels of damage for SFN

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- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Levels of damage for SFN (https://www.neurotalk.org/peripheral-neuropathy/223975-levels-damage-sfn.html)

Quote:

Originally Posted by _dreamer_ (Post 1160530)

Hi. I'm still waiting for my skin punch biopsy, which I get tomorrow, but...for me, tingling and pain came at the same time. The bottoms of my feet burn, and are worse at night.

Thanks for the update dreamer, I hope your biopsy provides some answers.

Quote:

Originally Posted by pinkynose (Post 1159935)

My experience has been similar to yours and in the same order except I do not have complete loss of sensation. I also have twitching or pulling of the muscles on my feet or legs at night while I try to sleep. This came right from the beginning and has continued. The other almost constant symptom I have now is burning pain in feet, legs or back. The other symptoms you mentioned I have sometimes but not constant.

I am sorry that I was not clear. I do not have complete loss of sensation.

I was trying to get some answers regarding levels of damage. I still have LOTS of pain.

I have no normal sensation anywhere now. It is painful to wear clothes and be touched.

It is a nightmare that I could have never imagined.

Thank you for responding.

My experience of the progression of the SFN has been slightly different.
The autonomic symptoms began many years before the sensory symptoms.
The first sensory symptom was numb hands, next came the tingling and burning feet, and later reduced sensation especially in the limbs.
But I haven’t had severe pain.

Is there any correlation between the specific skin biopsy and EMG results and the exact neuropathy’s symptoms ?

Quote:

Originally Posted by stillHoping (Post 1160732)

Is there any correlation between the specific skin biopsy and EMG results and the exact neuropathy’s symptoms ?

From all the stories here, it doesn't seem like skin biopsy results correlate with symptoms. It only gives an idea of the physical damage to the nerves. Some people have bad damage with limited symptoms, and some show no damage but have severe problems.

I haven't seen many comments about EMG results, so not sure on that one.

From what I have read EMG testing is ineffective for SFN.

Madisongirl... You say the burning was bad for several months. Has it gotten better? If so, do u think it was because u started meds? Or did the burning turn into numbness? Or did the burning and stinging just lesson in their own? ( I know u say u still have it but u said it was intense for several minths)

Quote:

Originally Posted by canagirl (Post 1160846)

There are probably several reasons why I could be doing a little better now than how I was at the beginning. I've been at this for 1.5 years so I could be getting more used to living in this abnormal state of pain. I'm on more medication now than when I was when it started. (I use a medication app for my iphone to remind me to take all my doses of meds.) Another important factor is I understand what is wrong with me now, which helped reduce some of my emotional stress. I'm a science person and work in a science setting, so I feel like I have a good understanding of the nuts-n-bolts of this disease. This helps me understand what to expect and what the things that I should try to do in attempt to find an underlying cause.

Here is the thing, some days I feel like I can get through the day...other days I tell myself that I need to break down and get a pain doctor. I went through several weeks of feeling awful. The burning on the back of my scalp was getting unmanageable. The pain all over my body was keeping me up half of most nights. Then, I took last week off of work and slept 8 hours each night. This week I'm feeling better, I'm more under control. I'm less stressed. I hurt less. The intensity of this thing can bounce around. It's way too early to know at this point if I'm getting better or worse. I'll probably need another few years or so to determine that.

Quote:

Originally Posted by Healthgirl (Post 1159679)

My experience is this:
First came tingling and numbness that happens from sitting, being slightly cold, it happens to my hands, arms legs, butt, and groin area. This has spread and become worse. Some days are much better than others with this.
Next came shooting deep nerve pains all over. Sometimes its a throbbing/ pulsing and sometimes a shooting- like when the dentist hits a nerve with the drill.
Then came the burning. My burning has been the least of my problems. I can imagine that some people have that more often and more severely.
Then came the stinging.
Now I have a combination of all of it, but haven't lost sensation anywhere permanently. Parts that go numb come back with tingling and then normal sensation.

Have you lost sensation anywhere?

I get all kinds of symptoms when I sit burning, pins and needles feel better when I am active, I want to be able to relax. I also get the same symptoms after or during dinner meal

Quote:

Originally Posted by boiler1993 (Post 1160435)

The answer to all of these is no. I should have mentioned that I was diagnosed with non-length dependent SFN this past winter (based on an abnormal SGNFD in the thigh and abnormal QSART testing). I am also about a week away from getting results for one of the sodium channel mutations.

Quote:

Originally Posted by madisongrrl (Post 1160882)

I think you have the key to this disease. Coping, adjusting and understanding and taking a rational approach stress and exhaustion play a big part

Two of the many sensations I have...

I carry my cellphone in a pocket on the side of my left thigh....I feel like my cellphone is vibrating but vibration is turned off on the phone. :rolleyes:

And I have to remove pretend rocks from my shoes all the time...Take shoe off...look inside....no rocks. So I call them pretend rocks.

There are many more.

:confused: