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?

Good morning and thank you for this forum. I was diagnosed with SFN a little over a year ago following several back sprains. I also have Celiac and thyroid issues. Turns out I have one of the neuropathy anti bodies TS-HDS. Does anyone know about this? Also, what are the best daily supplements to take. Thank you for any information. Would love to hear from a few fellow SFN in the same boat. Also, my feet are very sensitive and I use fleece liners in shoes plus wear thick heat holder socks for cushion. If anyone knows of soft shoes with padding similar to fleece, please let me know. Thank you and be well.

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@lmcfm1

Good morning and thank you for this forum. I was diagnosed with SFN a little over a year ago following several back sprains. I also have Celiac and thyroid issues. Turns out I have one of the neuropathy anti bodies TS-HDS. Does anyone know about this? Also, what are the best daily supplements to take. Thank you for any information. Would love to hear from a few fellow SFN in the same boat. Also, my feet are very sensitive and I use fleece liners in shoes plus wear thick heat holder socks for cushion. If anyone knows of soft shoes with padding similar to fleece, please let me know. Thank you and be well.

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Hello @lmcfm1, Welcome to Mayo Clinic Connect. I have small fiber peripheral neuropathy and take supplements as many of us do. I don't know much about TS-HDS but did find some information that may be helpful along with some links on supplements and nutrition.

Peripheral Neuropathy Nutrition — https://www.foundationforpn.org/living-well/lifestyle/nutrition/
Which supplements can help with neuropathy? — https://www.medicalnewstoday.com/articles/326917

Several Atypical Presentations of TS-HDS Associated Neuropathies: https://n.neurology.org/content/86/16_Supplement/P6.269
One to possibly watch – IVIG in the Treatment of Autoimmune Small Fiber Neuropathy With TS-HDS or FGFR-3 Antibodies
https://clinicaltrials.gov/ct2/show/NCT04153422

You may also find the following discussion helpful:
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Have you started any alternative treatments or supplements?

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My neurologist suggested Cymbalta Anyone have experience with this medication?

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@sjhedcon

My neurologist suggested Cymbalta Anyone have experience with this medication?

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Hi @sjhedcon, there is a discussion on Cymbalta where you can learn what others have shared on the drug.

Cymbalta: https://connect.mayoclinic.org/discussion/cymbalta-2/

Did your neurologist give you a specific diagnosis?

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@johnbishop

Hello @lmcfm1, Welcome to Mayo Clinic Connect. I have small fiber peripheral neuropathy and take supplements as many of us do. I don't know much about TS-HDS but did find some information that may be helpful along with some links on supplements and nutrition.

Peripheral Neuropathy Nutrition — https://www.foundationforpn.org/living-well/lifestyle/nutrition/
Which supplements can help with neuropathy? — https://www.medicalnewstoday.com/articles/326917

Several Atypical Presentations of TS-HDS Associated Neuropathies: https://n.neurology.org/content/86/16_Supplement/P6.269
One to possibly watch – IVIG in the Treatment of Autoimmune Small Fiber Neuropathy With TS-HDS or FGFR-3 Antibodies
https://clinicaltrials.gov/ct2/show/NCT04153422

You may also find the following discussion helpful:
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Have you started any alternative treatments or supplements?

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Thank you very much! I appreciate this forum and valuable information.

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@johnbishop

Hello @lmcfm1, Welcome to Mayo Clinic Connect. I have small fiber peripheral neuropathy and take supplements as many of us do. I don't know much about TS-HDS but did find some information that may be helpful along with some links on supplements and nutrition.

Peripheral Neuropathy Nutrition — https://www.foundationforpn.org/living-well/lifestyle/nutrition/
Which supplements can help with neuropathy? — https://www.medicalnewstoday.com/articles/326917

Several Atypical Presentations of TS-HDS Associated Neuropathies: https://n.neurology.org/content/86/16_Supplement/P6.269
One to possibly watch – IVIG in the Treatment of Autoimmune Small Fiber Neuropathy With TS-HDS or FGFR-3 Antibodies
https://clinicaltrials.gov/ct2/show/NCT04153422

You may also find the following discussion helpful:
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Have you started any alternative treatments or supplements?

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I am supposed to start IVIG therapy, but am nervous as I have read many mixed reviews and side effects. It doesn’t seem like there are established large volume studies. Any information would be helpful. I was so nervous I cancelled my first appointment.

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@johnbishop

Hi @sjhedcon, there is a discussion on Cymbalta where you can learn what others have shared on the drug.

Cymbalta: https://connect.mayoclinic.org/discussion/cymbalta-2/

Did your neurologist give you a specific diagnosis?

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Hello @sjhedcon,

I see that you are looking for information about Cymbalta. While I don't have neuropathy, I have neurological problems that result in pain and some numbness as well as sleep problems. I've tried various meds for this including Gabapentin, and I've found a low dose of Cymbalta (20 mg. once a day) to be marvelous. It takes a while for it to go into effect (don't expect overnight relief). I found it took several months before I began to notice a difference, but it did work for me with little to no side-effects.

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@lmcfm1

I am supposed to start IVIG therapy, but am nervous as I have read many mixed reviews and side effects. It doesn’t seem like there are established large volume studies. Any information would be helpful. I was so nervous I cancelled my first appointment.

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@lmcfm1, I think most of us are nervous of the unknown when starting a new treatment. @jimhd maybe able to offer some information on IVIG therapy. Also here is some information that may be helpful.

IVIg in Idiopathic Autoimmune Neuropathies: Analysis in the Light of the Latest Results: https://pubmed.ncbi.nlm.nih.gov/15959669/

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@lmcfm1

I am supposed to start IVIG therapy, but am nervous as I have read many mixed reviews and side effects. It doesn’t seem like there are established large volume studies. Any information would be helpful. I was so nervous I cancelled my first appointment.

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@lmcfm1 Hello and welcome to this fabulous forum. I also have SFN and although I am not a candidate for IVIG, I've done my fair share of research. A while back I had good conversations with another forum member who experienced IVIG. I'm sorry, can't remember who. Perhaps @johnbishop can dig up the thread.

I understand your concerns and fears of a procedure that is new or unfamiliar with minimal chatter. Today, I will receive a newly FDA approved migraine infusion at the hospital. Each time I accept a newly approved drug or procedure, of course I too have fear of the unknown, the possibility of long term, negative, lingering effects. It's scary. I hope as you weigh your options or pros vs. cons, you come to peace about what is right for your condition at this time. Best wishes.
Rachel

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Recently diagnosed with polyneuropathy in conjunction with spondy. Diagnosis is not a surprise, increasing pain during the day are a problem & sleepless nights torture. Still v active in spite of slipping knee & pain, walking even if it takes all day.

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Thank you for this forum. I have not advised my family of my diagnosis of idiopathic progressive polyneuropathy. Seems I am trying to brush it off, but pain is a glaring constant reminder. I attend appointments by myself due to Covid. My thoughts are with each & everyone experiencing this complicated ailment.

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@fuzzy1southernga

Thank you for this forum. I have not advised my family of my diagnosis of idiopathic progressive polyneuropathy. Seems I am trying to brush it off, but pain is a glaring constant reminder. I attend appointments by myself due to Covid. My thoughts are with each & everyone experiencing this complicated ailment.

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Hello @fuzzy1southernga, Welcome to Mayo Clinic Connect. You have come to a great place to learn more about your condition and how to become a better advocate for your health. There is another discussion that you may want to read through and learn what other members with your symptoms have shared.

IDIOPATHIC PROGRESSIVE POLYNEUROPATHY: https://connect.mayoclinic.org/discussion/idiopathic-progressive-polyneuropathy/

You mentioned in your first post having polyneuropathy along with spondy. Do you mean Spondylolisthesis?

Liked by rwinney

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Thanks for reply! Yes, sciatica, slipped vertebra & facet joint disease, L4 bulge, L-4-s1 pretty much disintegrating

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Thanks for link, will read now!

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I'm 79 yo & have numbness in feet & slightly in hands. Have had back issue for yrs. GP referred me to Neurologist but virus halted that. What can I expect when I do go?

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