New to neuropathy, terrified and seeking advice from you guys

Dr Zillox in Amherst NY works on people with pain in their feet but he takes no insurance, and you must pay up front 716/689/3629

Hi @dhnplant5, Welcome to Connect. Do you mind sharing a little more about your symptoms? Do you have neuropathy?

yes, I have had neuropathy for almost 20 years. I managed it with no medication or anything. Well now my symptoms have gotten worse. Numbness, cold toes and feet and a lot of pain. The Veteran's Clinic wanted to put me on Gabapentin and didn't want to see me and I declined. I went to see DR. Zillow and he uses no medicine except for a cream, and he uses equipment from Germany and France, and he has a different approach on it, and I will probably go with him but there is a huge cost to his program. He has written 2 books and he said that not pills or medicine or socks or ETC is my answer and I believe him.

It's good to hear you've found something that helps. Thanks for sharing it here on Connect. I don't take any meds for my neuropathy either but I've never had any pain, just the numbness for over 20+ years. I posted my story in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Thanks for sharing your experiences through this complicated journey. I know none of us are identical, but every single one of us are trying to advocate the best we can in these unchartered waters we’re going through simultaneously with a lot of our doctors. I am trained in finance, not medicine, so learning from folks like you with an edge in medical knowledge is a big benefit here. Sharing your diagnostic trials and errors helps us consider possible paths to take or avoid and discuss with our doctors as we navigate through our journeys. And you’re right, this Mayo Connect forum is the best way to hear from peers with experience on ways to understand, cope with, and live most practically & comfortably with our neuropathies. Please let us know what you discover!

That’s funny, I’ve seen a person here and assumed they used them to pick up trash along the way! I think the pole idea is brilliant. We just sold our condo and moved into an apartment temporarily until we find our next home. There is a short, wide step at the edge of our patio that doesn’t have a rail I can hold onto. It’s a pain having to have my walker around just to navigate the step when I’d like to get out and about that way. Since it’s an apartment, we can’t attach a rail to the step or cement a pole in the ground beside it, but these ski poles would work wonderfully! I can keep them on the patio so I can easily grab them to stick in the ground and safely make the little side step down. Thanks to whoever started this ski pole discussion!

I guess I liked the TV show “House” so much that I really believed there were dedicated teams at University hospitals to “connect the dots”. I too now accept many of us are much too complicated for the resources needed to do so in our world today. I do have a PCP I’m really impressed with, though as you know they can only connect you to a specialist for one type of system. I’ve had neurologists tell me at an appointment “you need to talk to your GI doc about that… that’s a question for your cardiologist “ etc. But I’ve accepted it now. It’s us, Dr. Google, and this great forum to help us learn maybe what good questions to next ask our doctors, and to learn how to maximize life while dealing with it.

I most certainly will share. I have friends who say that they take a pill and ask me what it is for. I have seen this a lot in nursing. I have seen this in patients and I know people are scared. I have seen this in my own family. I have another friend who says I don't want to know. That makes me sad and troubled. I myself want to know. I don't like the unknown but have come to partially realize that there is some unknown. I will continue to ask questions and find answers. I was born a yankee and I am the only one in my family, however I really consider myself a REBEL I certainly don't know everything but I have a pad of paper and a pen and I write those things down to ask.

Point them to the NHS website? It lists drugs and explains simply all about them, including side effects etc. and being non profit, they are free to say what they like. The drugs will be listed by chemical name, not trademarks btw.

My UAB visit yesterday was very satisfying. Dr Benesh sat and simply talked to me (and I’m sure watched all my fidgeting, rearranging, rubbing). I told him my story, and asked him to tell me about SFN. Since I am already doing a lot of PT, and using pain relief therapies that I’ve figured out, we ended up reviewing my medications - past and present. He knows my doctor here, and was typing notes as we talked that will go directly to him. They will communicate and work together. Such great news, and such a relief to know I have some coordinated medical care. Since he confirmed what I knew - that there is no cure, and will get worse - he said that we will continually tweak my medications. Right now my SFN symptoms ( burning toes, dizziness, palpitations, etc) are under control with Tegretol - which is another story entirely - but my overall pain is bad. Bad. He had some ideas of medication tweaks to deal with this.
I have dealt with this for seven years. The last 8-9 months I have had a rapid decline in my physical abilities due to pain, and subsequent weakness. It’s alarming. I feel much, much better to know that UAB has my back!