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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
@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?
Have either of you tried IVIG, plasmapheresis, or corticosteroids?
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Dear wolfbauer,
I did not realize that the problems I experienced prior to my diagnosis (2010) were related to a 'condition'. I was progressively unable to walk long distances, walk up hill, I stumbled and fell several times, I could not ride my new bicycle (I thought it was a the bike!
All of these problems were from neuropathy and foot drop.
I began wearing braces in January 2016. I began using a walker in February 2017.
I have had IVIG every four weeks since 2013 because I was found to have Primary Antibody Deficiency (CVID is the diagnosis). This IVIG hasn't affected my PN, in fact I have become completely disabled since 2013 and cannot walk unaided.
I haven't tried plasmapheresis.
Corticosteroids: I have taken 2 mg Medrol (methylprednisolone) every other day since 2013 in order to tolerate my IVIG. IVIG sets off an inflammatory response from my immune system and Medrol stops the inflammation.
When I have additional episodes of pain from periodic inflammation from my Immune Disorder, I take additional Medrol to stop that inflammation.
I suppose if a neuropathy is caused only by inflammation, then corticosteroids would be successful in helping the neuropathy.
In my case the nerves in my body are physically damaged by attacks from my Immune System, not from inflammation compressing the nerves.
I did have surgery on my back in 2016. The surgeon performed a physical decompression of a nerve in my spine. This is called a laminectomy/ The nerve in my spine, at L3 was compressed by arthritic overgrowth of bone which caused acute sciatica. I could not stand or even sit, but had to lie down or else I was in very severe pain. Once the surgery was performed, the pain was completely gone.
I hope this answers your questions.
Regards, ElaineD