Just Diagnosed with Small Fiber Neuropathy

Posted by boo55 @boo55, Feb 1, 2019

Hi . I am a bit scared here. Had positive skin biopsy for small fiber. What tests will the Neuro ask for to find causation? Was diagnosed prediabetic in Fall. My Dad had similar issues and eventually lost a toe. Always felt he was walking ” on fire “. My feet have similar issues. This is just one big Ick. Boo

Liked by teetee7, jasont, Mrs. H

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@mstrasse1

please take your god and worship somewhere else. This is a place where people suffering from neuropathy pain daily.
we expect to hear about others suffering the same pain and what they have tried to make their lives bearable.

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@mstrasse1

Neuropathy in all of its variations is a truly confusing illness to treat. That's why we participate in conversations about it here, hoping to learn from others what has or hasn't helped.

Faith is a key component of the treatment for any number of things. There are also many faith persuasions, any of which may well improve the quality of life for those who choose that particular flavor. @birdierobin and others share a common faith which is central to their approach to their pain. I believe that if you were to read more of what those who offend you have said, they would fit right in to your expectations of this conversation, namely that " We expect to hear about others suffering the same pain and what they have tried to make their lives bearable. " In fact, that's precisely what these men and women are doing.

Jim

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@darlingtondoll

Yes Jim, I found myself doing that too. I am a very private person, but I have unloaded here much more than I ever intended to do. My present husband doesn’t know what you all know about me here.

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@darlingtondoll

I think that many of us here have spoken about our inner struggles on a deeper level than we might do elsewhere. I feel that a primary reason for that is that we feel safe here. I know that's important to me.

Jim

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@fredjan2016

Hello Lisa, The injection is a "bilateral posttibial nerve block". The doctor said the electronic device is very similar to a spinal cord stimulator except it is installed above the foot on each leg.

I apologize for the late reply. I had a difficult time getting my neuropathy pain under control yesterday. Like most of us I have low pain days and high pain days.

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Hi, @fredjan2016 – my searches for the bilateral posttibial nerve block turned up all information for medical professionals, but this information on a .org for emergency medicine physicians seemed the most useful for laypeople of all of them https://www.acep.org/sonoguide/posterior_tibial_nerve_block.html

When will your treatment like this start, fredjan2016? How are you feeling about it?

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@jimhd

@mstrasse1

Neuropathy in all of its variations is a truly confusing illness to treat. That's why we participate in conversations about it here, hoping to learn from others what has or hasn't helped.

Faith is a key component of the treatment for any number of things. There are also many faith persuasions, any of which may well improve the quality of life for those who choose that particular flavor. @birdierobin and others share a common faith which is central to their approach to their pain. I believe that if you were to read more of what those who offend you have said, they would fit right in to your expectations of this conversation, namely that " We expect to hear about others suffering the same pain and what they have tried to make their lives bearable. " In fact, that's precisely what these men and women are doing.

Jim

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Well said Jim. I honestly can say that I have come to count on the words of others in the forum, you being one. Thank you. 🌞
Rachel

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@lisalucier

Hi, @fredjan2016 – my searches for the bilateral posttibial nerve block turned up all information for medical professionals, but this information on a .org for emergency medicine physicians seemed the most useful for laypeople of all of them https://www.acep.org/sonoguide/posterior_tibial_nerve_block.html

When will your treatment like this start, fredjan2016? How are you feeling about it?

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The injections are March 4th and I'm not very optimistic. If the procedure worked really well I think I would have read about it online. I constantly ask my doctors to try something and this is latest option. The injections only last for 2 to 3 hours, so I have to discontinue my pain medication 8 hours before the injections. I'll reply and let everyone know how it worked.

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@lauraj155

@johnbishop, @lisalucier – Thank you for responding to my question. I have been extremely frustrated with the level of care that I have received from the Neurologist. I cannot find anything about fasciculations with small fiber neuropathy. I have it mainly in my left foot and big toe where most of the nerve pain is. I can barely walk due to the pain, however my EMG appears normal and still waiting on small fiber results. Yes, I will probably have to seek a Neurologist out of network for a second opinion. I appreciate your help. -Laura

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Hi, @lauraj155 – wondering how you are doing with your small fiber neuropathy? Did you decide to get a second opinion?

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@birdierobin

My Faith keeps me going. Theres been discussions on shoes, diets, opioids opioids, addictions, infusions, injunctions, massages – whatever works & what doesn’t work. What works for one doesn’t for another. No judgements! So I ruffled feathers talking about Faith & God with others that are doing the same. So go figure. who cares! On another note, hair loss is a serious side affect of some medications & some illnesses & it’s a hard change in some people’s life’s. Let me know how your treatment choices are going Swartz ok? We are all looking for answers to some painful ailments – neuropathy!

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My insurance denied IVIG coverage. There's nothing else to try. I wish I could forget I have this and just live. I have become this condition. I'm seeing a Christian counselor. That helps. I know different medications work for people, and I'm not on any, so I don't want people to become discouraged.

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@swartzki

My insurance denied IVIG coverage. There's nothing else to try. I wish I could forget I have this and just live. I have become this condition. I'm seeing a Christian counselor. That helps. I know different medications work for people, and I'm not on any, so I don't want people to become discouraged.

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@swartzki, In a previous post you mentioned you had been taking alpha lipoic acid and have not had burning in your arms. Are you still taking the ALA?

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@swartzki

My insurance denied IVIG coverage. There's nothing else to try. I wish I could forget I have this and just live. I have become this condition. I'm seeing a Christian counselor. That helps. I know different medications work for people, and I'm not on any, so I don't want people to become discouraged.

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@swartzki I'm sorry about the insuance denial. Has your Dr. attempted to fight it for you? Do you have an auto immune disease? I hear that's the criteria for IVIG.

Good luck with counseling. That's a good way of thinking outside the box for treatment (and sanity).

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@johnbishop

@swartzki, In a previous post you mentioned you had been taking alpha lipoic acid and have not had burning in your arms. Are you still taking the ALA?

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John,
What is the difference NA-R-ALA and Acetyl L- Camitine ?

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Hi. I've had SFN poly peripheral. Don't be scared.
Getting the underlying cause will help treatment. Think of this, I don't know what causes mine so I just have to take heavy meds.
Plus being prediabetic isn't diabetes. And now you can try to reverse it.
I have the positive skin test and a bunch of others.
Trust your neuropathy doctors. Research as you go and ask your doctor every question you came to this board to ask. Doctors like patients engaged in their care. Don't give up.

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@albiet

John,
What is the difference NA-R-ALA and Acetyl L- Camitine ?

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@albiet, Na-R-ALA and Acetyl L-Carnitine are two different supplements. You can find out more with the following links…

Different Forms of Lipoic Acid: What You Need to Know – https://geronova.com/consumers/different-forms-of-lipoic-acid/
L-Carnitine | Linus Pauling Institute | Oregon State University – https://lpi.oregonstate.edu/mic/dietary-factors/L-carnitine
Acetyl-l-carnitine: Health Benefits, Uses, Side Effects, Dosage – https://www.rxlist.com/acetyl-l-carnitine/supplements.htm

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@johnbishop

@albiet, Na-R-ALA and Acetyl L-Carnitine are two different supplements. You can find out more with the following links…

Different Forms of Lipoic Acid: What You Need to Know – https://geronova.com/consumers/different-forms-of-lipoic-acid/
L-Carnitine | Linus Pauling Institute | Oregon State University – https://lpi.oregonstate.edu/mic/dietary-factors/L-carnitine
Acetyl-l-carnitine: Health Benefits, Uses, Side Effects, Dosage – https://www.rxlist.com/acetyl-l-carnitine/supplements.htm

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@johnbishop do you test to see if your deficient in any of these before you take them?
i noticed some like Acetyl-l-carnitine have possible side effects. I am debating trying 1 or 2 of these or try a larger vitamin protocol that you mentioned. my fear is always side effects and not being able to tell which thing your taking is causing side effects.
have you or anyone take these suppliments and seen improvement?

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@albiet

@johnbishop do you test to see if your deficient in any of these before you take them?
i noticed some like Acetyl-l-carnitine have possible side effects. I am debating trying 1 or 2 of these or try a larger vitamin protocol that you mentioned. my fear is always side effects and not being able to tell which thing your taking is causing side effects.
have you or anyone take these suppliments and seen improvement?

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@albiet, it's always a good idea to run any supplements by your doctor or pharmacist especially if you are taking any medications. The supplements I take which R-ALA and Acetyl L-Carnitine are included are at therapeutic levels to provide cellular level nutrition for the nerves. It has helped me slow and stop the progression of my small fiber PN based on my numbness symptoms.

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