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Member Neuropathy Journey Stories: What's Yours?
Neuropathy | Last Active: 1 day ago | Replies (577)Comment receiving replies
Hi John
I am new with Connect and looking for your advise and group members experience.
1. I first felt numbness in my left foot pinky in late 2018/early 2019
2. I felt strange when having my shoe on - feels like pressure on the entire feet but no pain. The pressure is relieved when the shoe is taken off
3. I have back pains in lumber area at the same time and thought that it was related and visited a Neuro surgeon who looked at my MRI and informed me that no nerve is under pressure although my entire spine has mild to moderate issues. I visited him again few weeks ago with new MRI and heard the same.
4. My GP sent me to a vascular surgeon due to my father history with PAD and leg imputations (non diabetic). I went through detailed lower extremity Arterial Duplex Examination twice to date: mild PAD in the right foot. Will go again for retest in December.
5. My GP sent me to a Neurologist who performed EMG/NCR with resulting indicating no Neuropathy, demyelination neuropathy, lumber plexopathy, radioculpathy or myopathy. He still think that I most likely have peripheral neuropathy or maybe SFN.
6. The present neurologist (my first one ever) isn’t not interested in getting the accurate diagnosis and claims that it is progressive which even neuropathy it is.
7. My present symptoms : After about 2 years since I first felt the numbness in my left foot, I now feel numbness in my right foot toe and part of button feet.
Both feet now have numbness but no pain to date. In the evenings, I feel coldness below the knees when seating down. Not sure if it is related or not.
8. I decided to schedule an appointment with a Neuromuscular specialist but Mayo in FL will not accept any new patients with Neuropathy leading me to another regional specialist.
I have few questions with more to come:
1. Does my symptoms match Neuropathy and/or SFN?
2. What medication would you recommend to eliminate the numbness in my feet?
Thanks
Eitan
Replies to "Hi John I am new with Connect and looking for your advise and group members experience...."
Good afternoon @ean. Thanks for joining us as we pursue solutions for the symptoms of neuropathy. What you need is a friend like John who has tried it all, evaluated it even more, and has a gentle way of introducing you to options and treatments. I have SFN, small fiber neuropathy and have been walking down the path with John for about four years. Generally, our symptoms are similar and we share treatment ideas and experiences.
The only kind of unfair item is that John has no pain. Maybe that is because I have enough for both of us. I offered to trade him one day but he didn't like my offer.......1 day of my pain for 2 days of his numbness. No go!
You see, we all suffer, we all attempt to structure a somewhat pleasant life. We research, we learn, we listen and then we give it a try. Sometimes we share the results, sometimes we are both in different SFN realms. If you do want to verify that you have SFN, you can ask your specialist for a skin biopsy test. Not difficult, no pain, and pretty specific results. At least that is a place to start.
May you be safe and protected.
Chirs
Connect
Hello Eitan @ea1, Welcome to Mayo Clinic Connect. Thank you for sharing your experience with neuropathy. You almost sound like me over 20+ years ago. Very similar story. When I first felt the numbness in my toes I didn't think much about it. Then when it went into the feet more I talked with my primary care doctor and he surmised it was nerve damage and said they could test for it. When I asked if you test for it and it turns out I have nerve damage, what can you do. When he said nothing I made the decision not to have the tests. Then in 2016 when the numbness was just below my knees I decided I needed to know. The neurologist scheduled some lab tests including an MRI, nerve conduction test and a physical exam. I was diagnosed with idiopathic small fiber peripheral neuropathy but unlike most people diagnosed with neuropathy I only had the numbness and no associated pain. I was disappointed that there was no treatment available even though I had a diagnosis but that is pretty much what my first doctor had told me 20+ years ago. You can read the rest of my story and what has helped me some at the beginning of this discussion if you scroll to the top and click the First button below the discussion description.
Since it seems you have the numbness only symptoms with your neuropathy like mine you may be interested in another discussion on Connect where others have shared about numbness only symptoms -- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
None of us here on Connect can give medical advice since we are not doctors. I do think the symptoms you have described sound like mine and I was diagnosed with idiopathic small fiber PN. Your second question as to what I would recommend to eliminate the numbness is the proverbial 64 thousand dollar question. There are no drugs that will help and I've tried about every topical on the market with zero success to eliminate the numbness. I do think the the protocol 525 supplement I have been taking since 2016 has slowed and possibly stopped the progression of my neuropathy which now feels like it's just above the ankles and not just below the knees when I started taking it but that is really subjective on my part.
I think you are on the right track in learning as much as you can about your condition and becoming a better advocate for your health. It may not help with the numbness but I would recommend keeping the skin on your feet and legs hydrated/moisturized with a good lotion since the peripheral nerves are near the skin.
You mentioned you are planning to setup an appointment with another specialist. You might want to make a list of any questions you have so that you can discuss them at the appointment. Can you let us know how it goes?