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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 4, 2019
In reply to @burningfeetinphoenix "@rwinney...I just saw your post! Rather disappointing. I have my appointment this week. I expect the..." + (show)
@burningfeetinphoenix

@rwinney...I just saw your post! Rather disappointing. I have my appointment this week. I expect the same...it is disheartening. Will keep you updated. I am pretty much starting out on this journey so there is so much I do not know yet. It sounds so hopeless though. I did get the prescription for compounded Phenyloin 10%. Was faxed to the pharmacy. I hope to get a call soon to pick it up. I am not too impressed by the topical PEA so far but the capsules are definitely a "mood enhancer". I am surprised that by now that I have not closed myself in a closet and died from my burning feet! Right now I am dealing with wound healing on my feet due to loss of sweat glands an circulation do to no innervation from the dead and dying nerve fibers. The areas of wounds not healed is where the burning is most intense because the boundary between the dermis and epidermis is being exposed to external heat. Sweating, also controlled by these nerves that stimulate the sweat glands (mine are almost gone in my feet according to the punch biopsy results), provide about 50% of the healing mechanism of wound healing. So the calluses turned in to wounds (because I was pool jogging over an hour a day all summer and the chlorine dried out the skin even worse than the lack of sweat). I am getting Laytex waterproof swimming socks to fix this problem. I am also going to see a wound care Dr. I think this will help a lot of the burning feet problem although it will never go away...as I am slowly finding out....Sorry for the rambling but I am, as you are, frustrated beyond words. It is odd that there has been no discussion in this forum on wound healing problems due to SFN?? Not sure yet if I understand that "protocol" John and others are talking about...It sounds promising. Pam

Jump to this post

Hey Pam

If there's time during your appointment, would you mind getting Dr. Levine's thoughts on Low Dose Neltrexone? It appears to be a promising compromise to pain relief without using opiods, tramadol etc...

SFN definitely gets in the way of proper healing. Maybe you can start a new thread. Last year I had one hell of a time healing a Chilblains outbreak on my toes. I also sweat which for me was/is big part of b12 deficiency, can be hydro, can be early menopause....you get my drift but, also SFN can be culprit!

My personal choice regarding the supplement Protocol thru FB (as I'm not on any form of social media) was to utilize it's suggested products and protocol of dosing. I've ordered independently thru Amazon. Slightly altered a couple of items from liquid to capsule for now and waiting to jump b12 that high until I'm tested in 2 weeks. (Had recently stopped getting injections and went to oral).

Because Dr. Argoff won't weigh in or read Protocol bc he is truly not trained in supplements, I've decided to request my own blood testing of any levels I feel may be compromised based on my research of harmful over/under.

Who's knows...nothing to lose but money as long as I'm medically safe and that sure can be a crap shoot! Now that I haven't worked for 2 years, it would be nice to receive some compensation for my medical work as it essentially is my job!

All the best with those feet and keep us updated on your appointment. Good luck!!
Rachel

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Oct 4, 2019

@rwinney, @burningfeetinphoenix Good afternoon ladies. Loved your open chat.

I want to clarify what you mean by wound healing problems. If you are talking about wounds that you create on your shin by scratching during the night
where the skin is very thin, then that is part of my experience.

I have that condition less frequently. My PCP looked at the mess, prescribed a topical steroid, and told me to leave it alone.

I covered the area with a cloth and Lo and behold, the wounds healed. Is that what you mentioned? If not, please give me a clue.

And also, I understand how easy it is to let yourself be coaxed into the doubting and questioning about your future.

You can teach yourself to be in the present and to be open to new chapters in your life. The future is yet to be defined. The past is gone. Today is “the present”’. Enjoy it. Make it memorable. Find some joy. Chris.

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burningfeetinphoenix | @burningfeetinphoenix | Oct 4, 2019

@artscaping...No, the wounds are mostly from calluses on my heels and sides of feet. Many of these came from hiking off trail on week long archaelogical surveys over the years. The calluses break open and will not heal. I was, and want to be again, an avid hiker, runner, volunteer archaeologist that climbs hilltop sites all over the Southwest like I did for nearly forty years! Now I am confined to my home mostly except when I am out trapping feral cats and fixing them in the night (when I can tolerate going outside in flip flops as I cannot wear socks or shoes). In the summer in Phoenix it can be 102 Deg F at 4:00 AM. This was my life. I am looking ways to live in the present but have not found that yet. I miss my past too much.. Seeing my friends and fellow enthusiasts going out on new adventures that I cannot participate in...Pam

REPLY
3 replies
jeffrapp | @jeffrapp | Oct 4, 2019
In reply to @rwinney "Reading this opens the door for me to update everyone on the meeting I had yesterday..." + (show)
@rwinney

Reading this opens the door for me to update everyone on the meeting I had yesterday with my Neurologist, Dr. Argoff.

He helped write the SFN book with other (Mayo) docs which I've posted about in the past.

He remains firm but fair with me over my long list of questions. I will never stop advocating for myself so I try to bring intelligent, productive questions but, sometimes they are desperate questions as well. Here it goes...

1. He reitterated....
there is no stage or progression clarification at this time and he would not even try to provide a guide line of comparison or progression between my case and another's based on his personal observations.

2. He believes in lidocaine infusions for pain relief. Each person may have a different experience. I dropped my infusion for one week to test my body and progression after over 3 months of receiving and it was not pretty. I'll continue, now that I have solid evidence, and go to my max highest dose next week. 20-40% relieve at this time.

3. He will only recommend Acetyl L Carnitine, Alpha Lipoic Acid and B12. He would not weigh in on or advise of any other supplements or vitamins as nothing is medically proven.

4. Same goes for topicals...has heard of PEA but offers no advice. No proof.

5. Same goes for cbd/thc. No medical proof or long term studies for neuropathy.

5. His next plan of action, if lidocaine infusions fail me, is IVIG. He claims Medicare does not cover IVIG so I don't qualify. Must look into parts XYZ...haha, don't understand that all yet.

6. Next would be plasmapherisis, blood clense. Covered by Medicare but, not without a fight maybe.

7. He believes in Ketamine powder more so than infusions but did not elaborate and I did not pursue (at this time).

8. Believes opiods may cause a viscous cycle of added pain and has agreed to help me get off them using the new drug Lucemyra. I'm agreeable as I've never wanted them in my body but fear no back up of immediate pain relief (not including cbd/thc, still weighing). If I choose this path...may possibly begin Low Dose Naltrexone to try for pain relief which he agrees with.

9. He says only by getting off opiods can we fully establish my true sources of pain. May legit be all from SFN but must rule out opiods contributing.

In conclusion, you all may know this stuff or not but, what we all DO know is...

Small Fiber Neuropathy continues to challenge the medical community around the world, it's patients, friends/families of patients and support groups. When Mayo declines assisting, you know there isn't much more to do, except count on each other and try our best to be patient with research and potential progress.

We can keep hoping that progress is made in each of our life times.

Rachel

Jump to this post

Hi RWinney
Thanks for all the great info.
BTW, it sounds like you have a great doc.
You indicate that you take lidocaine infusions, and that the next step may be IVIG.
May I ask what your diagnosis is? I thought that IVIG was indicated for CIDP, Did you have a test which indicates you may be a candidate for IVIG?
Keep up the good work, and best of luck!
Jeff

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 4, 2019
In reply to @burningfeetinphoenix "@artscaping...No, the wounds are mostly from calluses on my heels and sides of feet. Many of..." + (show)
@burningfeetinphoenix

@artscaping...No, the wounds are mostly from calluses on my heels and sides of feet. Many of these came from hiking off trail on week long archaelogical surveys over the years. The calluses break open and will not heal. I was, and want to be again, an avid hiker, runner, volunteer archaeologist that climbs hilltop sites all over the Southwest like I did for nearly forty years! Now I am confined to my home mostly except when I am out trapping feral cats and fixing them in the night (when I can tolerate going outside in flip flops as I cannot wear socks or shoes). In the summer in Phoenix it can be 102 Deg F at 4:00 AM. This was my life. I am looking ways to live in the present but have not found that yet. I miss my past too much.. Seeing my friends and fellow enthusiasts going out on new adventures that I cannot participate in...Pam

Jump to this post

I feel as though we all must naturally go through a mourning process of our loss and life changes. Hoping not permanently, so keeping the door open to opportunity and optimism is a must. Gentle reminders from you Chris certainly do help.

REPLY
Leonard | @jakedduck1 | Oct 4, 2019
In reply to @burningfeetinphoenix "@rwinney...I just saw your post! Rather disappointing. I have my appointment this week. I expect the..." + (show)
@burningfeetinphoenix

@rwinney...I just saw your post! Rather disappointing. I have my appointment this week. I expect the same...it is disheartening. Will keep you updated. I am pretty much starting out on this journey so there is so much I do not know yet. It sounds so hopeless though. I did get the prescription for compounded Phenyloin 10%. Was faxed to the pharmacy. I hope to get a call soon to pick it up. I am not too impressed by the topical PEA so far but the capsules are definitely a "mood enhancer". I am surprised that by now that I have not closed myself in a closet and died from my burning feet! Right now I am dealing with wound healing on my feet due to loss of sweat glands an circulation do to no innervation from the dead and dying nerve fibers. The areas of wounds not healed is where the burning is most intense because the boundary between the dermis and epidermis is being exposed to external heat. Sweating, also controlled by these nerves that stimulate the sweat glands (mine are almost gone in my feet according to the punch biopsy results), provide about 50% of the healing mechanism of wound healing. So the calluses turned in to wounds (because I was pool jogging over an hour a day all summer and the chlorine dried out the skin even worse than the lack of sweat). I am getting Laytex waterproof swimming socks to fix this problem. I am also going to see a wound care Dr. I think this will help a lot of the burning feet problem although it will never go away...as I am slowly finding out....Sorry for the rambling but I am, as you are, frustrated beyond words. It is odd that there has been no discussion in this forum on wound healing problems due to SFN?? Not sure yet if I understand that "protocol" John and others are talking about...It sounds promising. Pam

Jump to this post

@burningfeetinphoenix
Hope you will let us know how well the Phenytoin works. Oral Phenytoin/Dilantin is what doctors believe caused my Neuropathy (axonal shrinkage and demyelination.)
Your burning may improve, possibly go away. Mine did although the numbness is worse but it’s better than the burning, stinging and the awful pain.
Jake

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 4, 2019
In reply to @jeffrapp "Hi RWinney Thanks for all the great info. BTW, it sounds like you have a great..." + (show)
@jeffrapp

Hi RWinney
Thanks for all the great info.
BTW, it sounds like you have a great doc.
You indicate that you take lidocaine infusions, and that the next step may be IVIG.
May I ask what your diagnosis is? I thought that IVIG was indicated for CIDP, Did you have a test which indicates you may be a candidate for IVIG?
Keep up the good work, and best of luck!
Jeff

Jump to this post

Hey Jeff
I have Small Fiber Neuropathy from b12 deficiency and did not test positive for any auto immune diseases. My thoughts were that I did not qualify for IVIG for this reason but Dr says otherwise. I have not pressed him on his theory yet. One step at a time.

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 4, 2019
In reply to @rwinney "Hey Jeff I have Small Fiber Neuropathy from b12 deficiency and did not test positive for..." + (show)
@rwinney

Hey Jeff
I have Small Fiber Neuropathy from b12 deficiency and did not test positive for any auto immune diseases. My thoughts were that I did not qualify for IVIG for this reason but Dr says otherwise. I have not pressed him on his theory yet. One step at a time.

Jump to this post

and yes, I'm grateful to have a proactive Dr who up to this point has not steered me wrong.

REPLY
burningfeetinphoenix | @burningfeetinphoenix | Oct 4, 2019

@rwinney..I have the same question about iVIG. However, I have read some papers about the possibility of idiopathic SFN being potentially cause by an as yet to be discovered autoimmune entity. There are several iVIG trials just for this purpose going on right now including one at the neurologists' office I am going to next week. I will be asking about this clinical trial and have seen a few more out there doing similar trials... Pam

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 4, 2019
In reply to @burningfeetinphoenix "@rwinney..I have the same question about iVIG. However, I have read some papers about the possibility..." + (show)
@burningfeetinphoenix

@rwinney..I have the same question about iVIG. However, I have read some papers about the possibility of idiopathic SFN being potentially cause by an as yet to be discovered autoimmune entity. There are several iVIG trials just for this purpose going on right now including one at the neurologists' office I am going to next week. I will be asking about this clinical trial and have seen a few more out there doing similar trials... Pam

Jump to this post

Yep, and I'm not a happy camper that my doc tells me Medicare does not cover IVIG. Not sure I'm completely settling for that until I do my own research.

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