Living with Neuropathy - Welcome to the group

You are correct in your analogy of interviewing. My Neuro is a brilliant man but lacks bedside manner and empathy, unless I'm crying. I have felt trapped with him and because he is highly acclaimed, Im afraid to search for another who may not know as much or be as connected in the field as he. I go back for a follow up Wed after a slew of new blood tests which he tried to reply (via portal) by referring me to a Gastro Dr (for new findings) with not so much as even addressing the chief reason he did the blood work up in the first place...my heightened pain and failing body. This is what I mean. UGH! Because I know my stuff and generally come in prepared, he appears to be put off. I am polite in my presentation except when I get beyond frustrated or scared. That may result in tears or mild sass. Anyway, thanks for the advice. We all continue to help each other through experience. Unfortunately, I do not know specifically the nerves along the top of a foot but do know that mine burn and are painful from any form of flexing or pressure such as snug shoes, walking, standing, driving etc... which is why I cant drive, stand long or walk much. For me, due to Small Fiber Poly Neuropathy.

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Follow up:

Saw my Neuro today and he was his usual dismissive, arrogant, challenging self. He did come around, after my persistence of wanting to rule out more surrounding SFN, and referred me to another neurologist for further review and EMG/nerve conduction study. I'm not 100% sold on him doing this because he's nit qualified to help me in these areas any longer or he chooses to rid of me. Win, win either way. I'll hang in there with him for now with migraine treatments which are cut and dry but, not sure I will ever care to work with him again regarding SFN.

@qball2019 - thanks so much for giving me a nudge in the right direction. It was what I needed to hear at the right time as my medical relationship with this Dr has caused me undo stress. It's like sticking around in a bad marriage for the kids. My SFN, aka "the kids" , made me feel trapped to not cut my nise off to spite my face. I deserve better. So, I guess it was meant to be.

He is graciously helping to expedite the referral for me and we shook hands upon departure. Fair.

I suppose his ego and arrogance in hyping himself up made me believe he was the only one to help me and that's not true. Lesson learned. Boy, do I keep learning.

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Follow up:

Saw my Neuro today and he was his usual dismissive, arrogant, challenging self. He did come around, after my persistence of wanting to rule out more surrounding SFN, and referred me to another neurologist for further review and EMG/nerve conduction study. I'm not 100% sold on him doing this because he's nit qualified to help me in these areas any longer or he chooses to rid of me. Win, win either way. I'll hang in there with him for now with migraine treatments which are cut and dry but, not sure I will ever care to work with him again regarding SFN.

@qball2019 - thanks so much for giving me a nudge in the right direction. It was what I needed to hear at the right time as my medical relationship with this Dr has caused me undo stress. It's like sticking around in a bad marriage for the kids. My SFN, aka "the kids" , made me feel trapped to not cut my nise off to spite my face. I deserve better. So, I guess it was meant to be.

He is graciously helping to expedite the referral for me and we shook hands upon departure. Fair.

I suppose his ego and arrogance in hyping himself up made me believe he was the only one to help me and that's not true. Lesson learned. Boy, do I keep learning.

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@rwinney

I'm so sorry to hear that your Dr. treated you so poorly. Maybe him referring you to a different one will be a blessing. Now get yourself ready for your appt. with the new one. Make yourself a list of what you want to mention. Include your frustration with this last guy and how he made you feel. Pour it all like we were talking about previously. Make sure after you put all your cards on the table that ask him/her if they are willing to think out of the box a little bit.Then ask if they are willing to work with you. That way they already know what you expect before moving forward.

Best of luck to you! Keep us posted!!

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Hello everyone . I was in a minor accident in 2011. My Ulnar Nerve got compressed at the elbow and required surgery to release. The surgery took care of the numbness below the elbow but I have been left with extreme neuropathy pain above the elbow. The Drs play dumb to what’s happening. Several MRI’s, reveling disc bulging with minor central protruding effects they say isn’t bad enough for surgery . The pain is so severe I disagree. Meanwhile, I slowly have lost a lot of use in my left arm. Now my balance is gone. Which C4, C5 controls. Now they say I have Parkinson or Multiple System Atrophy, Supra Nuclear Palsy or Hydrocephalus. My appt with Mayo is March 24. I don’t know what to think anymore. I am 63

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Hello everyone . I was in a minor accident in 2011. My Ulnar Nerve got compressed at the elbow and required surgery to release. The surgery took care of the numbness below the elbow but I have been left with extreme neuropathy pain above the elbow. The Drs play dumb to what’s happening. Several MRI’s, reveling disc bulging with minor central protruding effects they say isn’t bad enough for surgery . The pain is so severe I disagree. Meanwhile, I slowly have lost a lot of use in my left arm. Now my balance is gone. Which C4, C5 controls. Now they say I have Parkinson or Multiple System Atrophy, Supra Nuclear Palsy or Hydrocephalus. My appt with Mayo is March 24. I don’t know what to think anymore. I am 63

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My name is Charlie. I go by Catro. I am almost 82 and have had PN more than 10 years, but recently it has gotten worse having moved from my feet up my legs and into my hands and arms. The mystery is why I can feel fine during the time I am awake but about 2 hours after I go to sleep I wake up with my feet, legs and hands burning. This sleep wake cycle goes on until I finally get up and move around. It gradually subsides and I have a good day with little or no pain. Then I go to bed and it starts all over again. Does anyone experience this? Does anyone know what is going on in my body while I am asleep that is doing this to me. I’ have been off of sugar, alcohol, and anything high glycemic for several months.

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@catro
I'm sorry that I didn't see your message sooner. Have things improved over the past couple of months?

I have similar symptoms, Catro. Similar in that as soon as I lie down or lean back in the recliner with my feet on an ottoman, they start in on burning pain. My daytime pain level is very unpredictable. My lowest pain is at 2, but it will go up to 8 fairly quickly. My feet and ankles hurt when I'm standing still, when I'm driving, and when I'm walking.

The pain is sometimes lessened by wearing loose socks. Other times I have to be barefoot because the socks (and anything else) cause pain by contact.

In bed, I have a pillow to keep between my legs so they don't touch each other, and another pillow under my feet. I have a blanket lifter to keep the bedding from touching my feet. I sleep on my side usually, though I have to lie on my back and prop up my head so I don't feel suffocated and have a panic attack. Sometimes I can rest my feet on the feather pillow, but sometimes I have to arrange my feet so only the heels are on the pillow and the rest of my feet hang off it. If that doesn't work I dangle them off the edge of the bed. Wherever they are, I can't let them touch each other. Wherever they make contact, there will be pain.

I use lidocaine cream on the burning areas, to numb the pain long enough to get to sleep, or sitting in my recliner, or driving. It helps, but it's very much temporary.

Are there certain things that start your pain? Can you find a position of comfort, even if it's just for a short time? Can you tolerate shoes? Have you found a certain shoe you can wear?

Each of us in these discussions about neuropathy are always on the lookout for new things to try - things that have helped others may or may not work for you or me.

I have sleep apnea and use a Bipap machine. It improves my sleep health enough that I don't wake up every night because of pain. Sleep's an important contributor to overall health. Before I was diagnosed with sleep apnea I snored a lot and stopped breathing, so I was chronically tired from sleep deprivation. What a change a CPAP machine made in my life. Sleep is good.

What things have helped you? If you could share those things with us, it could help a lot of people. I suppose you've read some of the things people have posted here. I hope that we can offer you some support and ideas.

Jim

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