Living with Neuropathy - Welcome to the group

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?

My neurologist suggested Cymbalta Anyone have experience with this medication?

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?

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

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.

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.

@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/

@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

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.

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.