1. < Neuropathy

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

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fredjan2016 | @fredjan2016 | Feb 23, 2020
In reply to @lisalucier "Hi, @fredjan2016 - my searches for the bilateral posttibial nerve block turned up all information for..." + (show)
@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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Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 28, 2020
In reply to @lauraj155 "@johnbishop, @lisalucier - Thank you for responding to my question. I have been extremely frustrated with..." + (show)
@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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swartzki | @swartzki | Mar 2, 2020
In reply to @birdierobin "My Faith keeps me going. Theres been discussions on shoes, diets, opioids opioids, addictions, infusions, injunctions,..." + (show)
@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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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Mar 2, 2020
In reply to @swartzki "My insurance denied IVIG coverage. There's nothing else to try. I wish I could forget I..." + (show)
@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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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Mar 2, 2020
In reply to @swartzki "My insurance denied IVIG coverage. There's nothing else to try. I wish I could forget I..." + (show)
@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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albiet | @albiet | Mar 2, 2020
In reply to @johnbishop "@swartzki, In a previous post you mentioned you had been taking alpha lipoic acid and have..." + (show)
@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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1 reply
demonsleeve | @demonsleeve | Mar 2, 2020

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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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 2, 2020
In reply to @albiet "John, What is the difference NA-R-ALA and Acetyl L- Camitine ?" + (show)
@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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1 reply
albiet | @albiet | Mar 2, 2020
In reply to @johnbishop "@albiet, Na-R-ALA and Acetyl L-Carnitine are two different supplements. You can find out more with the..." + (show)
@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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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 2, 2020
In reply to @albiet "@johnbishop do you test to see if your deficient in any of these before you take..." + (show)
@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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