Small Fiber Neuropathy

LouLou1978 · 03-06-2015, 04:03 PM

I forgot to mention too, I discussed ivig treatment with the neuro. The neuro said they would agree to a trial of this on NHS, I am going to ask about this again once I get results back.

JoannaP79 · 03-07-2015, 01:48 PM

Quote:

Originally Posted by LouLou1978

Hi Joanna, of course I will definitely keep you updated. To be honest the rheumy seemed at a loss to the cause. I am too in the south of UK and have a very good neurologist who also works in London. He was away for a few months so I saw a locum neuro who did a lot of rheumy anti body blood tests, I haven't received the results yet.

When I saw the rheumy consultant she did the tear duct test and saliva test. There was an abnormality with the left tear duct test so this is why she is doing the lip biopsy. To be honest I don't think she had much of a clue about small fiber neuropathy. Going back to the skin biopsy, I am guessing you probably saw the same professor as me, if it is he said the skin biopsy can give clues to the cause,which it did with mine, it showed that the nerves were re-generating too much rather than where there is a loss of the nerve fibers , he suggested this is in keeping with a neuroinflammation, not sure what that means or auto immune disease, like sjogens.

He also mentioned voltage gated potassium channels, he said it has also been seen in people who have had chemotherapy or certain drugs. He has said in his letter that metronidazole which he noted I took before onset of symptoms can cause sensory neuropathy but he wanted everything else checked out first. I am hoping to get blood results and see the neuro in a few weeks, I am hoping I may get some answers. it is so frustrating!

Sounds like the same Professor guy to me. He said to me that regeneration or splitting of nerves can be a sign of inflammation which is often a sign of some sort of autoimmunity. Regards the frustration, I feel your pain-literally!

I have been going to a rheumy and neuro for months and months now. Hope you get somewhere soon and some treatment or help may be in the pipeline. If it is the medication, it sounds like there could be hope for it to resolve or stop progressing at some point. Keep us posted. I will do the same. Jo

MAT52 · 03-11-2015, 05:02 PM

Quote:

Originally Posted by LouLou1978

Hi Joanna, of course I will definitely keep you updated. To be honest the rheumy seemed at a loss to the cause. I am too in the south of UK and have a very good neurologist who also works in London. He was away for a few months so I saw a locum neuro who did a lot of rheumy anti body blood tests, I haven't received the results yet.

When I saw the rheumy consultant she did the tear duct test and saliva test. There was an abnormality with the left tear duct test so this is why she is doing the lip biopsy. To be honest I don't think she had much of a clue about small fiber neuropathy. Going back to the skin biopsy, I am guessing you probably saw the same professor as me, if it is he said the skin biopsy can give clues to the cause,which it did with mine, it showed that the nerves were re-generating too much rather than where there is a loss of the nerve fibers , he suggested this is in keeping with a neuroinflammation, not sure what that means or auto immune disease, like sjogens.

He also mentioned voltage gated potassium channels, he said it has also been seen in people who have had chemotherapy or certain drugs. He has said in his letter that metronidazole which he noted I took before onset of symptoms can cause sensory neuropathy but he wanted everything else checked out first. I am hoping to get blood results and see the neuro in a few weeks, I am hoping I may get some answers. it is so frustrating!

I too am thoroughly frustrated by it all Lou Lou. As you have replied to my post about skin biopsies I just wanted to add to the welcome. I live on an island North of Scotland so also depend on the nhs for my healthcare and treatment. Mat

LouLou1978 · 03-12-2015, 02:21 AM

Quote:

Originally Posted by MAT52

I too am thoroughly frustrated by it all Lou Lou. As you have replied to my post about skin biopsies I just wanted to add to the welcome. I live on an island North of Scotland so also depend on the nhs for my healthcare and treatment. Mat

Thankyou Mat52, Please keep me updated with how you get on. The professor I saw in London said that the skin biopsy can give clues to the cause too. Is the biopsy being sent to London?

MAT52 · 03-12-2015, 02:51 AM

Quote:

Originally Posted by LouLou1978

Thankyou Mat52, Please keep me updated with how you get on. The professor I saw in London said that the skin biopsy can give clues to the cause too. Is the biopsy being sent to London?

Don't know where it's sent Lou Lou - maybe Edinburgh or Glasgow because that's where the neuropathologist is. I did have a biopsy done on my chest last year to rule out Lupus and other immune stuff. It was equivocal so I guess my body doesn't want to spill the beans much!

tarheel15 · 03-17-2015, 03:32 PM

Hi, I was diagnosed with SFN following a flu vaccine in Oct 2012. All my testing was normal, including 2 skin biopsies a year apart, except for abnormal QSART testing at Cleveland Clinic. I have tried every medication out there and usually cannot tolerate the side effects. I am on Neurontin, B12/folate.
I did a trial of IVIG which gave me some bad side effects without great benefit.
Now I feel stuck - I am in a bad flare of symptoms right now with severe burning all over the body - head to toe. Insomnia and fatigue are also bad. Heat intolerance is hard to deal with - anything that raises my HR causes a burning prickly feeling all over thats painful.

Any suggestions or ideas? I am in the medical field and try to keep up on research etc. Sometimes I also feel like I maybe pre-diabetic though all my tests are normal.

janieg · 03-17-2015, 03:46 PM

Quote:

Originally Posted by tarheel15

Sometimes I also feel like I maybe pre-diabetic though all my tests are normal.

My screening tests, Fasting Blood Glucose and A1c, are both normal too, but I do indeed have a problem. I'm insulin resistant and my blood sugar spikes too high after a high carb meal, and stays too high too long. Is that the cause of my SFN? Don't know, but I'm treating myself like a diabetic and eating low carb. All around, it's a good idea anyway, diabetic or not.

I knew I had reactive hypoglycemia and had some issues, but didn't realize I was heading down a bad road. Home monitoring told the tale.

You can get a generic monitor from WalGreens for something like $15, and then get that money rebated back to you. The strips are where they make their money, but I just bought 150 on ebay for $24 which is ridiculously cheap.

Just a thought if you're really concerned about it.

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