[Spectrum]

Hi - I posted this today in the new members area, and am posting here as as well.
I am new to this forum. I’m 46. My small fiber neuropathy symptoms began suddenly in April 2012. The symptoms started in my feet and then spread to almost my entire body within a 2-3 week period.
My current symptoms consist of pain, burning, pins & needles and tingling in my feet (wet, liquid, cold), calves, thighs, hands, arms, torso and sometimes face – essentially over most of my body. The surging of pain, tingling, pins & needles, etc is so bad it causes my thighs, torso and arms to shake. My symptoms appear to have worsened in the last few months and it is severely disrupting my life.
My sleep has also been significantly disrupted by the neuropathy and also by ongoing back issues, which are both worse at night.
I initially saw a neurologist at a renowned national center who thought my condition would resolve quickly given that it had come out of nowhere and progressed so rapidly. He thought it was some variation of Guillen-Barre that would likely fade out as quickly as it came, but that didn’t happen.
I’ve tried Neurontin, Nortryptyline, Tramadol, and Cymbalta and none have been helpful. I also did a 5- day course of IVIG which had no effect. My neurologist is now out of ideas, so I am now seeing a new one who seems to be aggressive in trying to address these issues. I had an initial appointment a few weeks ago and am going back next week to hear her recommendations. I’ve had the full battery of testing done by both doctors to search for a cause but none has been found. I’ve also had 2 skin biopsies which confirmed the diagnosis. I am taking alpha lipoic acid, acetyl L-Carnitine and other supplements like a multi-vitamin, Vitamin E, fish oil, C, and CQ-10.
Now that this hasn’t dissipated and appears to be getting worse, it has turned my life upside down. I’m not sure that I’m asking for any advice, but wanted to join the community and see if anyone has ideas. Thank you.

[mrsD]

Welcome to NeuroTalk.

What was going on with you when this started? Illness, trauma,
vaccines, etc?

Did you have B12 levels done? Vit D? Do you know your results in numbers? (not just "normal").

It is important. Doctors accept outdated lows in lab ranges,
and they are often NOT normal.

Did you have tests for IgG and IgM?

Our PN forum:
http://neurotalk.psychcentral.com/forum20.html

Our PN subforum with lots of informational posts:
http://neurotalk.psychcentral.com/forum119.html

[Spectrum]

The only thing I can think of happening at the time that I was getting Platelet Rich Plasma (PRP) and prolotherapy injections for some ongoing back problems. I was getting multiple injections each session, from my neck down to my behind. Maybe the doctor hit something and set this off...I don't know. I wasn't sick, and all of my other health indicators were good at the time. I did have tests for IgG and IgM and they were normal. So was my Vit D and B12 but I will check the numbers as your recommended. I've been taking D3 and B-12 supplements for the last few months. As you can imagine, this has been a nightmare, and the symptoms are no very widespread and appear to be worsening.

[QUOTE=mrsD;934992]Welcome to NeuroTalk.

What was going on with you when this started? Illness, trauma,
vaccines, etc?

Did you have B12 levels done? Vit D? Do you know your results in numbers? (not just "normal").

It is important. Doctors accept outdated lows in lab ranges,
and they are often NOT normal.

Did you have tests for IgG and IgM?

[Spectrum]

Have you heard of anything like this in your time on Neuro Talk? (i.e. a case with such acute onset, rapid progression and no relief from the various medicines - at least the ones I've taken thus far).

[QUOTE=Spectrum;935002]The only thing I can think of happening at the time that I was getting Platelet Rich Plasma (PRP) and prolotherapy injections for some ongoing back problems. I was getting multiple injections each session, from my neck down to my behind. Maybe the doctor hit something and set this off...I don't know. I wasn't sick, and all of my other health indicators were good at the time. I did have tests for IgG and IgM and they were normal. So was my Vit D and B12 but I will check the numbers as your recommended. I've been taking D3 and B-12 supplements for the last few months. As you can imagine, this has been a nightmare, and the symptoms are no very widespread and appear to be worsening.

Originally Posted by mrsD

Welcome to NeuroTalk.

What was going on with you when this started? Illness, trauma,
vaccines, etc?

Did you have B12 levels done? Vit D? Do you know your results in numbers? (not just "normal").

It is important. Doctors accept outdated lows in lab ranges,
and they are often NOT normal.

Did you have tests for IgG and IgM?

[mrsD]

No, not prolotherapy. But you know, invasive procedures are always suspect. Not many people get prolotherapy now. Look what is happening in NECC compounding pharmacy with contaminated product!

I personally don't think that was the first and only problem there.
Information is coming out that it was YEARS of problems there.

So with many injections of who knows what... you could have an issue with those procedures. Could.
I don't know how to test for it... either. But it is something to think about.

[Spectrum]

How about just generally hearing of cases of SFN with such a rapid onset and progresson, regardless of cause? I think what has happened to me is very rare, but I could be wrong. PS Thank you so much for responding to all of these questions. I really appreciate it.

[hopeful]

[QUOTE=Spectrum;935004]Have you heard of anything like this in your time on Neuro Talk? (i.e. a case with such acute onset, rapid progression and no relief from the various medicines - at least the ones I've taken thus far).

I actually have heard of it because it is exactly what happened to me. It started in my feet, up and legs and arms and right side of face in a few weeks time. My neuro told me he had never had a patient with neuropathy that moved so quickly. Also, have tried many meds without any relief. However, Cymbalta did give me some relief for the burning in my feet. I have been on it a few years now and think it may not be working as well anymore. I am currently receiving IVIG. I think it helps a little.
You are the first person I have found that had such a rapid progression as I. I know how scary it can be. Hang in there and keep fighting.

[Spectrum]

Sounds familiar...lucky us haha. I'd be interested in hearing more about your case if you don't mind. Maybe I can PM or email you.

[QUOTE=hopeful;935023]

Originally Posted by Spectrum

Have you heard of anything like this in your time on Neuro Talk? (i.e. a case with such acute onset, rapid progression and no relief from the various medicines - at least the ones I've taken thus far).

I actually have heard of it because it is exactly what happened to me. It started in my feet, up and legs and arms and right side of face in a few weeks time. My neuro told me he had never had a patient with neuropathy that moved so quickly. Also, have tried many meds without any relief. However, Cymbalta did give me some relief for the burning in my feet. I have been on it a few years now and think it may not be working as well anymore. I am currently receiving IVIG. I think it helps a little.
You are the first person I have found that had such a rapid progression as I. I know how scary it can be. Hang in there and keep fighting.

[heb1212]

Originally Posted by Spectrum

Hi - I posted this today in the new members area, and am posting here as as well.
I am new to this forum. I’m 46. My small fiber neuropathy symptoms began suddenly in April 2012. The symptoms started in my feet and then spread to almost my entire body within a 2-3 week period.
My current symptoms consist of pain, burning, pins & needles and tingling in my feet (wet, liquid, cold), calves, thighs, hands, arms, torso and sometimes face – essentially over most of my body. The surging of pain, tingling, pins & needles, etc is so bad it causes my thighs, torso and arms to shake. My symptoms appear to have worsened in the last few months and it is severely disrupting my life.
My sleep has also been significantly disrupted by the neuropathy and also by ongoing back issues, which are both worse at night.
I initially saw a neurologist at a renowned national center who thought my condition would resolve quickly given that it had come out of nowhere and progressed so rapidly. He thought it was some variation of Guillen-Barre that would likely fade out as quickly as it came, but that didn’t happen.
I’ve tried Neurontin, Nortryptyline, Tramadol, and Cymbalta and none have been helpful. I also did a 5- day course of IVIG which had no effect. My neurologist is now out of ideas, so I am now seeing a new one who seems to be aggressive in trying to address these issues. I had an initial appointment a few weeks ago and am going back next week to hear her recommendations. I’ve had the full battery of testing done by both doctors to search for a cause but none has been found. I’ve also had 2 skin biopsies which confirmed the diagnosis. I am taking alpha lipoic acid, acetyl L-Carnitine and other supplements like a multi-vitamin, Vitamin E, fish oil, C, and CQ-10.
Now that this hasn’t dissipated and appears to be getting worse, it has turned my life upside down. I’m not sure that I’m asking for any advice, but wanted to join the community and see if anyone has ideas. Thank you.

Spectrum and Hopeful:
I'm glad you both have dug deep and, like me, found this web site. I've learned there is no "magic pill," but solid information from compassionate, informed people and validation do help at some level. I, too, had a rapid onset of body wide neuropathy about a year and a half ago. Just miserable... I'm truly sorry. A stranger, but I "get it!" Started with burning in my big toes. Spread to my lower legs and feet initially with just intense tingling and then to outright burning within days. Then, over a couple months my whole body, literally, including inside my mouth, ears and face. Tortured, long story short... all tests negative. I HATE the word "idiopathic!" I've had such a hard time with this "just happening"... for no apparent reason. I did have a virus a couple months before all this began, so there's the suggestion of a viral component, but in the end, all that can be offered to me is symptomatic treatment. Every day for 18 months I've looked to see if this was a better day, if there's some improvement... trying to stay "Hopeful!" But, it's really overwhelming. So, the answer is, yes, this has happened to someone else. We're a rare club! I've kept Glenn's story and recovery tucked away in my mind... maybe, with time, I too will recover. My strength and hope is in the Lord, always. I hope you'll considering turning to Him for comfort, too. A verse my daughter shared with me to give me strength:
Proverbs 3:5: Trust in the Lord with all your heart. Lean not on your own understanding. In all your ways, acknowledge Him, and He shall direct your path."
Blessings and hope for better days to us all!