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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: Mar 24 10:28am | Replies (548)

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@johnbishop

Hello Dan @hansblix, Welcome to Mayo Clinic Connect. Thank you for the private message. I thought I would answer it in this discussion so that you can read the stories of different members and learn what they have shared from their experience. If you click the VIEW & REPLY button in the email notification it will take you to this post in the discussion - Member Neuropathy Journey Stories: What's Yours? You might want to scroll to the top of the discussion and click the First button to take you to page one if you have not already read my story.

You mentioned that you have the same diagnosis as myself - idiopathic small fiber peripheral neuropathy and you were diagnosed at Mayo. You also mentioned this is the first winter of having the severe pain and you are now having trouble with the cold here in the midwest. I don't have the pain with my neuropathy but I can really feel the cold and it bothers me also. I have to wear just below the knee compression socks which are thin so in the winter time I also wear some heavy wool socks over the compression socks to help keep the feet warm. When I have to work outside, I've also discovered adhesive toe warmers which I can attach to the bottom of my socks at the toes, aptly called "Little Hotties". They do keep my toes and feet warm and last around 5 hours which helps a lot. Shoes are really important also. I've pretty much gone to all slip-ons for convenience. There is another discussion for shoes that help with neuropathy that you might find helpful

- If the shoe fits...right?: https://connect.mayoclinic.org/discussion/if-the-shoe-fits-right/

You mentioned the cold being your current concern because of the midwest winter time. Are you currently taking medication to treat the neuropathic pain? Are you able to share a little more about your symptoms?

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Replies to "Hello Dan @hansblix, Welcome to Mayo Clinic Connect. Thank you for the private message. I thought..."

Hello John, @johnbishop and anyone else. I am new here, and would like to learn more about what we may all be going through, in different ways and in different circumstances.

Please allow me get it out, because I and my wife (and 3 children) are greatly troubled:

I have been diagnosed with "idiopathic bilateral sensory neuropathy" in the FEET at Mayo Rochester in early December 2020 (EMG, sweat test, and all the rest). I take it that many of you know some of the coping and medical strategies for this. Also MIGRAINES.

But I have increasing pain in both KNEES. They took a July 2020 MRI on both knees that revealed "patelloformal syndrome" (moderate cartilage loss under both kneecaps) that, according to the following 3 specialists, does not correspond to the severity of the pain I am experiencing. Thus each of these doctors have just referred me to other doctors and left the matter undiagnosed and untreated:

1) A local highly-ranked orthopedic surgeon who referred me immediately to a well-known opiate doctor (July 2020)

2) A local young rheumatologist who said it's not rheumatological and said, somewhat irresponsibly, I've never seen such a case and "it must be a rare nerve disorder." (September 2020)

3) A local muskuloskeletal neurologist who a) did not know what patelloformal syndrome even was, b) said I was wrongly referred to him by the local neurologist coordinating all my care, c) that the rheumatologist was wrong when she said it was a nerve disorder, d) I should seek pain management (opiates). (Yesterday, 4 January 2021).

For the knees, I have lidocaine patches 5% for each knee, 12 hours on each day, 12 hours off. I'm taking tizanidine 4mg but I think that just calms me down a bit, and I think it's a muscle relaxer and doesn't address the nerve issue. I also use CBD topical cream.

I am on 800mg of gabapentin 3x a day for 5 months. Things are not getting better.

Needless to say, I am at my wit's end. SO...

Immediately after yesterday's muskuloskeletal specialist consult I scheduled an emergency psychiatric consult with a social worker and a psychiatrist for psychological TRAUMA for this afternoon (5 January 2021).

(All these nerve/neuropathy problems started about 6 weeks after I was hospitalized with "unintentional lithium toxicity" and withdrawn abruptly from very high doses of lithium (the psychiatrist admitted he never tested me for lithium blood levels; for 10 years he said he confused me with another patient of his) and effexor and trazodone.)

At today's TRAUMA consult, it looks like I will be asking for duloxetine & a shoulder to cry on for having to pay all the "costs," financial and physical and psychological, for many MDs not healing, but in many ways harming.

Mindbody techniques have been helpful, but I need a crutch, a band-aid, a drug, but precisely the kind of serotonin/norepinephrine drug that was perhaps wrongly given to me for years based on a misdiagnosis of bipolar II that stuck with me for 20 years.

Now it's out. I don't know who will read this, but it's now out.

Perhaps I am not alone.

Thank you for reading this.

Daniel