Replies to Dear Eric, I didn't even notice any symptoms, until I was diagnosed with Profound Peripheral Neuropathy….

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Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@elained

Dear Eric,

I didn't even notice any symptoms, until I was diagnosed with Profound Peripheral Neuropathy. I discounted my stumbling and slowness as 'being out of shape'. I found it harder and harder to walk any distance and up hills.

I didn't have any particular pain with the neuropathy in my feet and legs. The diagnosis was made 9 years ago. I used to ski,, ride a bike, hike, I wasn't an athlete but I did lots of fun things.

Now I have leg braces and walk with a walker. And I have many neuropathies in other parts of my body. The Small Fiber Neuropathy is very painful and I take Gabapentin for it.

No cause for my neuropathies has been established through testing (and I've had ALL the tests several times). My Immunologist believes that my own Immune System mistakenly attacks my own body, damaging the nerves is various parts.

When I had sciatica recently (2006) and it was unbelievably painful, I had a laminectomy and it stopped the sciatica completely.

It is hard to be so disabled,, and to have no cure or even treatment to slow down the progress of the disease.

Regards, ElaineD

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Replies to "Dear Eric, I didn't even notice any symptoms, until I was diagnosed with Profound Peripheral Neuropathy...."

wolfbauer | @wolfbauer | Feb 4, 2019

@ericvnelson @elained I'm sorry to hear you both are having such a hard time and are having difficulty finding any hope. Hopefully this community and the suggestions and experiences described by it's members lead you to doctors/treatments that will help you!

I will be 32 in April, and was only just diagnosed with small fiber neuropathy this past summer (causing autonomic nervous system dysfunction on top of myofascial pain syndrome, fibromyalgia, spine damage from a 2011 car accident including a syrinx and 3 disc problems, a tumor on the T8 spinal nerve, [among other things]).

Starting in November it seemed like my symptoms started progressing rapidly, more intense/widespread weakness and numbness, worsening pain that was already quite debilitating, inability to keep weight on (the initial symptom that sent me to the doctor was losing 50 pounds in a month a couple years back. I put 15 back on, but I've lost it and continue to lose weight), terrible hot sweats alternating with chills, balance issues with a fall, a separate syncopal episode, and I'm sure I'm missing other symptoms.

When you two were first were diagnosed, did you have minimal symptoms? When I was diagnosed, I already had troublesome symptoms and was set up with a physical therapist. With all the other health issues I have/have had, I'm thinking I've had this much longer than I thought, and that my symptoms went unnoticed/attributed to my other conditions. I feel like I completely missed that period of relatively 'normal' physical ability. I played hockey year round, ran track, skied, hiked, lifted weights (all except year round hockey continued through college)... I get tired typing now and have difficulty playing guitar or writing. I still can walk unassisted, but the longer I am in a sitting or standing position, the more tired I feel and the worse my pain gets... I often lay in bed, on the couch, or on my monster giant bean bag as taking the weight off my spine in that position is the only position that doesn't make the pain worse. I feel like I'm going to need a cane soon to help my balance, but I don't know how that will work out as my arms go numb and constantly feel weak (I took out an empty dinner plate the other night and had to put it down after a minute).

Elaine, can I ask how long after your diagnosis 9 years ago your symptoms progressed to the point of needing leg braces and a walker?