Small Fiber Neuropathy
 

Hi Everyone,

I am a new member here so not sure if I have posted in the correct section.

I am a 37 year old woman from Uk just have been diagnosed with sfn through skin biopsy.

My symptoms first started in Dec 12 with strange feelings in my feet, like something stuck to them. then a funny buzzing feeling, 6 months later I saw a neurologist, he done some basic blood work and mri of brain and spine, which was all clear. said it was anxiety. fast forward another month. Went to Tenerife on holiday,when there had strange water drop feelings all over my body when out in heat, even on head. went back to neurologist on return. said was anxiety! fast forward another year, symptoms carried on with funny feelings in feet, and stomach and fingers ( no pain) water drop thing stopped when returned home from holiday. went through NHS and saw neurologist who defo thought it was sfn and referred me to professor in London for skin biopsy. neuro did all bloodwork,came back normal, nerve conduction test normal, thermold threshold test normal. Saw the professor in London at xmas and results are back which shows a clear increase on skin biopsy ,so looks like my nerves are rengenerating too much as he said the regenerating marker was also increased which is in keeping with neuro inflammation or an autoimmune disease. He did also note that I had taken metronidazole in the November and December before on set of symptoms and said this could have also been the cause. Once I found out it was sfn, I was completely shocked and now have burning all over my body, the neuro said the anxiety of it all had brought it all out. it is strange as it must have been there for some time but didn't start to cause pain until I panicked. Proff said it can also be caused by voltage gated potassium channels, I have just been tested for this too along with fabry disease, auto immune anti bodies and I am also having a lip biopsy as ive been told it is in keeping with sjogens syndrome. I have also been given the genetic testing I think for volgate gated sodium channel mutations. this whole thing is driving me mad, I have 2 small children, I wish I knew what it was, still waiting for blood results.:confused:

Welcome LouLou 1978. :Wave-Hello:

Hello LouLou 1978
 

I believe you are in the right place, many SFN people here plus many other acronyms enough to fill a book. I hope that your blood tests will give you something to work on. I remember the anxiety to find a correct DX(diagnosis)
and matching symptoms. That may be problematic as this affliction is as diverse as people. Whether from toxicity or any myriad of causes, when you go to the Neuro try to be together mentally with notes that keep you focused on brief history and principal symptoms. I write this as a precautionary statement because if you go in and panic in front of the Dr., you risk being funneld into Hypochondriac or unstable category. Study here and use search function, the folks here dispense much better info than U-Tube as I have read conflicting stuff there. Nutrician, excersize, sleep and finding out if there is an underlying cause will all help. Try not to let worry rule as you go forward, lots of folks walking the same road. Good Luck, Ken in Texas

Hi LouLou,

Welcome, and greetings from Maryland.

Your symptoms are very familiar to me, including the sensation of water dripping on your body. It sounds as if your doctors are doing all the right tests to try to find the cause.

The sodium channel issue is at the forefront of research right now. They've identified several gene mutations they believe to be involved with SFN. Do you know your results yet?

Anxiety and worry can definitely make your symptoms 10x worse. I know getting your emotions under control is easier said than done, but it's something that will help. I found that once all the really bad things had been ruled as a cause, I was able to cope a little better. And by remaining active on these forums and continuing to look for causes on my own and trying different things, I don't feel totally alone and helpless.

My symptoms are actually better today than they were a year ago. The odd sensations in my legs are there non-stop 24x7, but I no longer have the searing the nerve pain or severe burning I once had in my legs and feet.. I still get the burning, but it's not as bad. I also still "buzz" all over my body at times when I'm stationary. I will often wake up in the morning and feel like I'm plugged into an electrical socket.

At this point, I think one of two things, or a combination of both, has contributed to my improvement: 1) Taking R-Lipoic Acid supplements which are widely believed to help SFN 2) Going on a strict low carb diet.

Regarding the latter, my diabetic screening values are perfectly normal, but more in depth testing has shown that I'm what I call "pre-pre-diabetic." Given that genetics may play a role in this, maybe someone with just mildly elevated blood sugar can develop problems if they were "blessed" with bad genes. Regardless, sugar is not a good thing for your body any way you look at it, so cutting back on carbs would be a good thing.

Until and unless a doc tells me my SFN is genetic, I look at it as a symptom of another problem they just can't find. I'll keep trying to find it on my own by trial and error and by getting ideas from this forum.

Janie

Thank you everyone for your kind comments.


I have been following this site for about 6 months but was abit nervous about posting as I am a bit of a nightmare and worrier

it is nice to know I am not alone, yes the water dropthing was weird, I have only experienced this is hot weather though, I the normal UK weather it is fine.

Proff in London also mentioned that my skin biopsy is not in keeping with diseases like diabetes as this causes a loss of fibers on skin biopsy, for some weird reason mine is the opposite - trust me to be different hey! I think he mentioned this as I had gestational diabetes in my pregnancies. I am a only a small person weighing just 8 stone, so I don't think blood sugars is the problem.

all really weird !

..

Hi Lou Lou,
Welcome to the group!
I also have young children and was diagnosed first with fibromyalgia and then with SFN a few months ago. I have the water spots also along with many other extremely painful symptoms. I was so glad to find this group. The people here are full of knowledge and it is a supportive positive atmosphere for a pretty lousy situation.:)

Thank you everyone. I have just chased up the Rhuemy and am having to wait until May for the lip biopsy thing for sjogens syndrome.

I hope to have a neurology appointment in April with results of my Fabry, voltage gated potassium channels and also the voltage gated sodium channel results. I will update you all with everything.:)

Hi Lou Lou- your story sounds very familiar. I also recently had a skin biopsy carried out by a renown professor in London! Still waiting for my results. I already have an autoimmune disease called ankyosing spondylitis and the more i read the more I keep coming back to sjorgens too. I have awful burning, stabbing, numbness etc permanently in my legs and autonomic ymptoms such as tinnitus and electric sensations throughout body. Thats just some of it. I would be curious to hear how it goes with any diagnosis. My rheumy just wont consider anything else as I have ankylosing spondylitis and everything is attributed to that. One treatment for one doenst work for another so knowing the exact cause behind these things is of course a desire for all of us.
I've done a fair bit of research on treatments for sjorgens itself and am confsed about what there is and what is effective.
Hope you are managing pain ok. I have found gabapentin to be a real help, I am on 2700mg now. I have just started going into a hyperbaric oxygen therapy chamber. Im going an hour a day every day for three weeks. Its offered at my local MS centre. Although I dont beliee I have MS, they have acceted me to use it based on my neuropathic symptoms. I have felt alot better this week and I started the therapy this week. Cold just be that I upped my gabapentin and am taking alpha lipoic so dont know what might be the reason for the pain relief.

Forgot to add - if you don't mind, could you keep us posted on any suggestions your rheumy makes ref addressing the route cause (if possible). All discussions I have with gp's focus on managing the pain. My rheumy has talked about treatment using humira (an anti TNF blocker for certain autoimmune diseases) - I do however worry about the impact this sort of thing has on neuropathies as I have read reports this can excacerbate that. (excuse all typos!)

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!