Living with Neuropathy - Welcome to the group

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?

@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

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@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

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@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

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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.

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@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.

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

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@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

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@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

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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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@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.

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Thanks, @rwinney. From time to time, I'm tempted to push for the IVIG myself, because I'm convinced my PN is caused by some autoimmune process. It feels like my body is eating up my nerves. I also tested negative for antibodies, but there are so many of them. They never tested for anti-Jeff Ab's.

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@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

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Hi Pam.
Are you in the trial? Keep us posted about results.
Jeff

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@jeffrapp…No, I am not in the trial. I just found out I have SFN and have not even been seen yet by a neurologist! Have waited several months to get in to see one. You can find the trial I mentioned. I cannot post a link but you can go to clinicaltrials.gov and put Small Fiber Neuropathy in the search and look for:

IVIg for Small Fiber Neuropathy With Autoantibodies TS-HDS and FGFR3

It is being conducted by Harvard, Beth Israel Hosp. in Boston and Phoenix Neurological Associates (where my appointment is this coming week). Will keep you posted.

Pam @burningfeetinphoenix

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@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

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I am wondering how this would be different from any other callus build up? I had that happen to me about 10 years ago – the callus split and it took FOREVER to heal. And for such a small wound, boy did it hurt with every single step!!! I finally found a good quality pedi tool to help reduce the thickness and a foot cream that helped to break down the remaining calluses – and VOILA! It healed. Since it was such an incredibly painful experience that I never want to repeat again, I take extra effort to ensure the calluses on my feet don't build up again. But it sounds like yours may be somehow different? Can you help me understand?

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@jakedduck1

@lorirenee1
Hi Lori or should I say Imelda,
100 pair of shoes. But you don’t particularly like shoes. I have a question then, how many feet do you have? I did get a kick from your post. Thanks for the chuckle.
Jake

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@jakeduck1 Imelda would be jealous of me! It's weird; I have never really been into shoes, but once the foot neuropathy kicked in, I started researching shoes to wear. One thing lead to another, and I started bidding on these very expensive Wolky shoes that my feet could tolerate. Then I had to find colors and styles to match my clothes, and Amazon practically started giving away Spencos. I now have a stunning shoe wardrobe. The thing is that I could put on a shoe that I thought was comfortable, to find it now intolerable. I could put the same shoe on the next day, and it is fine. Bottom line is that the neuropathy rules, and I have become nuts trying to find a solution. As I write, my feet feel like there is a blow torch on them. That's with wearing Spencos. I quit. There is no solution to this. I gotta go shopping….. not to buy shoes!!!! Lori Renee

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@lorirenee1

@jakeduck1 Imelda would be jealous of me! It's weird; I have never really been into shoes, but once the foot neuropathy kicked in, I started researching shoes to wear. One thing lead to another, and I started bidding on these very expensive Wolky shoes that my feet could tolerate. Then I had to find colors and styles to match my clothes, and Amazon practically started giving away Spencos. I now have a stunning shoe wardrobe. The thing is that I could put on a shoe that I thought was comfortable, to find it now intolerable. I could put the same shoe on the next day, and it is fine. Bottom line is that the neuropathy rules, and I have become nuts trying to find a solution. As I write, my feet feel like there is a blow torch on them. That's with wearing Spencos. I quit. There is no solution to this. I gotta go shopping….. not to buy shoes!!!! Lori Renee

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@lorirenee1
I wasn’t raised to doubt to word of a lady but I didn’t know clothes came in so many colors. I bet looking in your closet is like looking into a kaleidoscope. I only have 4 basic colors of clothes couple shades of blue, black, few shades of grey and brown. Being a guy is a lot simpler wardrobe wise although the Neuropathy did add a few more pairs. I usually only wear my New Balance which are falling apart.
Jake

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@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

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@burningfeetinphoenix, @rwinney, From what I can see right now is that your wounds are related to diabetes. Is that correct?

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@artscaping

@burningfeetinphoenix, @rwinney, From what I can see right now is that your wounds are related to diabetes. Is that correct?

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@artscaping… No, I do not have diabetes. Right now I am told I havei diopathic SFN.

Liked by Leonard

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@jakedduck1

@lorirenee1
I wasn’t raised to doubt to word of a lady but I didn’t know clothes came in so many colors. I bet looking in your closet is like looking into a kaleidoscope. I only have 4 basic colors of clothes couple shades of blue, black, few shades of grey and brown. Being a guy is a lot simpler wardrobe wise although the Neuropathy did add a few more pairs. I usually only wear my New Balance which are falling apart.
Jake

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@jakeduck1 It's funny you should mention the color of clothes. I am a curly, red head, and so my wardrobe is mostly autumn….. burnt red, rust, olive, gold, beige, some black, gray. If I had to wear purple, I swear I would hurl. But somehow, I guess it's the different styles, not only colors, that got me going. You know…you need dress shoes, leisure shoes, gym shoes, sandals, flip flops…..but in fall colors!!! Goes with the red hair. Now….go buy yourself some new New Balance. I have two pairs. They are the best…Sometimes. Ya never know with Neuropathy. Be well….that is all that counts. The rest is small stuff. Lori Renee

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@wellness3070

Anxious to discuss peripheral leg neuropathy and treatments.

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I have peripheral neuropathy in the left leg….knee to ankle for several years. It has improved considerably over time with exercise almost daily. I too am interested in helpful treatment. Most recently both hands have tingling.

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