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?

@sunny2

@rwinney Thank you very much for this information Rachel. Are lidocaine infusions covered by Medicare? It’s good to know that your Dr endorses taking acetyl L Carnitine as I have seen conflicting opinions about its use. I actually bought a bottle but haven’t started taking it yet. There are some days when I feel very down but, for some reason, today I feel hopeful that there is a way forward to controlling the discomfort. I think one of the reasons for my hopeful attitude today is the support and sharing I see among members of this group, so thank you all.

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Didn’t help me!

Liked by Leonard

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@sunny2

@rwinney Thank you very much for this information Rachel. Are lidocaine infusions covered by Medicare? It’s good to know that your Dr endorses taking acetyl L Carnitine as I have seen conflicting opinions about its use. I actually bought a bottle but haven’t started taking it yet. There are some days when I feel very down but, for some reason, today I feel hopeful that there is a way forward to controlling the discomfort. I think one of the reasons for my hopeful attitude today is the support and sharing I see among members of this group, so thank you all.

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Welcome! Unfortunately I am not sure. I won't begin Medicare until the first of the year.

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@rwinney

Welcome! Unfortunately I am not sure. I won't begin Medicare until the first of the year.

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…and as always, ask your Doctor, do your research and see what may be best for you.

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@monce1189

Hi my name is andrea i am in the process of finding a diagnosis, i have high kappa light chain (urine) and so rheumatologist referred me to hematologist, kappa light chain disease is what I was told I have so far until apt with hematologist. Kappa light chain is 48.9 lambda 3.41 ratio is 14.34 just want to see what other people think, and what road I may be heading in
I am a momma of 3+1 bonus =4 girls
29yrs old
Father had cancer 3× non hodgkins, multiple myeloma, and plasymotoma
And information helps thank you tons!

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Hi Andrea @monce1189, Welcome to Connect. I'm glad you found Connect and I'm hoping some other members will be able to provide some information for you. I had not heard of kappa light chain disease but did find some information on the Genetic and Rare Diseases Information Center that may give you more information about it.

Light chain deposition disease — https://rarediseases.info.nih.gov/diseases/6906/light-chain-deposition-disease

I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where other members have posted about kappa light chain test numbers.

> Groups > Blood Cancers & Disorders > Current diagnosis is Amyloidosis and multiple myeloma
https://connect.mayoclinic.org/discussion/what-a-shocker/

How soon is your upcoming appointment with the hematologist? I hope you are able to come back and let us know what you find out.

Liked by Leonard

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@johnbishop

Hi Andrea @monce1189, Welcome to Connect. I'm glad you found Connect and I'm hoping some other members will be able to provide some information for you. I had not heard of kappa light chain disease but did find some information on the Genetic and Rare Diseases Information Center that may give you more information about it.

Light chain deposition disease — https://rarediseases.info.nih.gov/diseases/6906/light-chain-deposition-disease

I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where other members have posted about kappa light chain test numbers.

> Groups > Blood Cancers & Disorders > Current diagnosis is Amyloidosis and multiple myeloma
https://connect.mayoclinic.org/discussion/what-a-shocker/

How soon is your upcoming appointment with the hematologist? I hope you are able to come back and let us know what you find out.

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Hi @johnbishop thank you I have been searching everywhere to get some insight becuase it seems that alot of people including myself have not heard of it. Thank you so much for your input and help, my referral and authorization was just put in on the first so I am hoping I will see my hemotologist in the next week or two hopefully sooner than later becuase I feel so crummy and exhausted.😣 thank you tons 😊

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@lorirenee1

@jimhd I read all that you wrote about your feet, shoes, walking without them, etc., and it was like a carbon copy of myself. I cannot even tell you. For what it is worth, and who really knows for you, I order Spenco shoes at qvc.com They have a custom orthotic inside, and are one of the few shoes I can wear. They seem to be the only ones that align my foot straight, and one of the few that don't make me feel like I have cotton or wood stuffed in my shoes. They run true to size, and have a large toe box, so that your toes can move easily. Maybe take a peek? I swear, I cringed reading what you wrote about your feet. One day, I think I will sleeping with shoes on. That is how bad it is to be barefoot. Anyway, good luck. We have to keep our sense of humor, or all is lost!!! Lori Renee

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@lorirenee1

I have a number of Spenko insoles. I think that at my next appointment with the pain specialist I'll ask him about me seeing a foot specialist.

I buy most of my shoes at thrift stores. I know. I never thought I'd do that. But I look through the shoes at every store and look for any in my size that look brand new. I'm pretty picky when it comes to shoes. The first thing I look for is size, then I look at the toe bed, and make sure there's no wear on the soles. Then I try them on, and then I take whatever insoles I'm wearing that day and put them in the "new" shoes and walk around the store.

A few years ago I lined up all of my shoes and cowboy boots and was a little surprised to find that I had 55 pair of shoes. I managed to delete a few that were duplicates. I have a rack in the walk in closet, a row of them under my bed and under my chest of drawers, and I have a bunch of them in my study, mostly my cowboy boots.

I had lost hope of ever wearing my boots, but I wore a pair of lacers on Sunday and because of the new medication, my feet didn't hurt nearly as much as I thought they would.

Thanks for the recommendation. I'll check it out.

Jim

Liked by Leonard

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@jeffrapp

Hi John
Thanks for making us aware of this wonderful idea. I'm not sure how well this will translate in the real world.
In my experience, the medical care system in this country has badly deteriorated over the last 2 or 3 decades. Most of the providers are still highly trained, motivated, and hard working. The problem is, no surprise, money now rules everything.
Back in the day, most physicians were self employed, and were able to do things their way. Now, almost all work for some group, often owned by a hospital system, and have to answer to bosses (hospital administrators or group bureaucrats, insurance companies, various levels of governments, etc) They are forced to see x number of patients per hour lest they lose their jobs.
Many have become angry and dissatisfied.
Throw in a maddening, time consuming disease like peripheral neuropathy, which is often impossible to find a cause for, and even harder to treat in most cases, and you have the makings of a disaster.
I am confident that some day there will be a cure and/or effective treatment. The problem, especially for us older patients, is how long we have to wait.
In the meantime, we have to keep trying different treatments and tricks, and keep up a good attitude.

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You said it all very well!
Sometimes when I feel I’m the bad guy because drs can’t do anything and I feel having me on their schedule is a pain in the ass to them I read words from a kind partner in frustration, I smile!
Thanks

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@jimhd

@lorirenee1

I have a number of Spenko insoles. I think that at my next appointment with the pain specialist I'll ask him about me seeing a foot specialist.

I buy most of my shoes at thrift stores. I know. I never thought I'd do that. But I look through the shoes at every store and look for any in my size that look brand new. I'm pretty picky when it comes to shoes. The first thing I look for is size, then I look at the toe bed, and make sure there's no wear on the soles. Then I try them on, and then I take whatever insoles I'm wearing that day and put them in the "new" shoes and walk around the store.

A few years ago I lined up all of my shoes and cowboy boots and was a little surprised to find that I had 55 pair of shoes. I managed to delete a few that were duplicates. I have a rack in the walk in closet, a row of them under my bed and under my chest of drawers, and I have a bunch of them in my study, mostly my cowboy boots.

I had lost hope of ever wearing my boots, but I wore a pair of lacers on Sunday and because of the new medication, my feet didn't hurt nearly as much as I thought they would.

Thanks for the recommendation. I'll check it out.

Jim

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@jimhd Hi, Jim. I say, wherever you can get shoes you can tolerate, buy them. I tend to buy new Wolky shoes also, on eBay. Wolky is a very high end, costly shoe that I have gotten for as low as 15 dollars. Brand new, and fabulous. The problem with my feet is that only the Spencos seem to be pretty consistently comfortable on me. Especially their flip flops. My feet are aligned almost human in them. Yes, HUMAN! I have easily 100 pairs of shoes. Most are very high end, and I can wear them. I also give away shoes to friends, all the time. But the Wolky shoes and the Spencos seem to be best for this crappy neuropathy. Also, Amazon sometimes sells the Spenco shoes very cheap, but not as of late. It changes all the time, depending on vendors selling them. Could you ever have imagined shoes taking over our house??? I just bought this great piece of furniture with many shelves, and of course, shoes on every shelf. And I really don't particularly like shoes. It's the damn feet!!!! OY! Lori Renee

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@lorirenee1

@jimhd Hi, Jim. I say, wherever you can get shoes you can tolerate, buy them. I tend to buy new Wolky shoes also, on eBay. Wolky is a very high end, costly shoe that I have gotten for as low as 15 dollars. Brand new, and fabulous. The problem with my feet is that only the Spencos seem to be pretty consistently comfortable on me. Especially their flip flops. My feet are aligned almost human in them. Yes, HUMAN! I have easily 100 pairs of shoes. Most are very high end, and I can wear them. I also give away shoes to friends, all the time. But the Wolky shoes and the Spencos seem to be best for this crappy neuropathy. Also, Amazon sometimes sells the Spenco shoes very cheap, but not as of late. It changes all the time, depending on vendors selling them. Could you ever have imagined shoes taking over our house??? I just bought this great piece of furniture with many shelves, and of course, shoes on every shelf. And I really don't particularly like shoes. It's the damn feet!!!! OY! Lori Renee

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@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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@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

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@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

@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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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

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@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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@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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@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

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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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@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 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.

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