1. < Neuropathy

New to neuropathy, terrified and seeking advice from you guys

Posted by tom01255 @tom01255, Aug 21, 2022

I've had neuropathy in my feet for a couple of years, and the neurologist I consulted has never tracked down the cause. I didn't worry too much because it was just a numbness in my toes. This summer, though, it spread to my hands, up my arms, into my shoulders and into my legs. The neurologist did a biopsy and says that it gave no clue to the cause. He hasn't recommended any treatment, and my condition is worsening daily. I've contacted one university neuropathy clinic and been told that it will be a couple of weeks before they decide whether the doctors there will see me. I can't seem to get any medical personnel to take me seriously.

Interested in more discussions like this? Go to the Neuropathy Support Group.

hoeewaa | @hoeewaa | Sep 18, 2022

I haven't discussed the dizziness with my doctor yet. I believed the dizziness was caused by some toxic spray when I sprayed ants however if it continues I will mention it to my doctor.

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1 reply
centre | @centre | Sep 19, 2022
In reply to @hoeewaa "I haven't discussed the dizziness with my doctor yet. I believed the dizziness was caused by..." + (show)
@hoeewaa

I haven't discussed the dizziness with my doctor yet. I believed the dizziness was caused by some toxic spray when I sprayed ants however if it continues I will mention it to my doctor.

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Just a note to thank-you for your service and to suggest that (if you haven’t already) to contact your county Veterans office (in my county it’s with the Area Agency on Aging) to find out about financial benefits available for COMBAT veterans. My dad’s combat service (WWII) caused their real estate taxes to never increase after he retired (NJ), my brother-in-law’s combat service (Vietnam) has provided for full payment of the real estate taxes for his widow (MA). There is a Home Care aide benefit available for combat veterans too. Please check it out if you haven’t already.

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rpenn | @rpenn | Sep 23, 2022

have your neurologist do a protein electrophoresis to check for abnormal blood cells called mgus which may cause neuropathy at least in my case

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windsorchris | @windsorchris | Sep 24, 2022
In reply to @tom01255 "Thank you for all the great information! I will check out those links. I have tingling..." + (show)
@tom01255

Thank you for all the great information! I will check out those links. I have tingling and pain. This afternoon I took the dog for a brisk 2-mile walk, and afterward felt very tired and weak in my legs. I'm really worried about ending up disabled.

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Neuropathy is our fate. Wake up every day determined to: walk, exercise, eat right and to be happy.

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pamelaz | @pamelaz | Oct 20, 2022
In reply to @nitsirk "Hi, I too have an idiopathic neuropathy. Correct me if Im wrong but is this a..." + (show)
@nitsirk

Hi, I too have an idiopathic neuropathy. Correct me if Im wrong but is this a purely sensory neuropathy? Ie you don’t get any weakness, or organ issues, more pain, crawling, burning, numb patches etc etc? Thats what I get anyway. I have Wartenbergs Migratory Sensory Neuropathy. I got positive tinels sign - so do an inner wrist reflex test and feel an electric shock like sensation. I also have irregular nerve conductivity as tested for by an electromyogram. Let me know if its the same sort of thing or not before I go off on a big speil! They don’t like diagnosing this if it is, because its what left when no one knows whats the issue.

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I have pins and needles and can hardly walk.

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1 reply
frattmaa | @frattmaa | Oct 21, 2022

I had the same issue. Well meaning neurologist but you have to get one who specializes in Neuropathy or they will be of little help if any at all. Do what you have to do to get a Neurologist Specializing in Neuropathy. It will make a world of difference.
I wish you well and my heart breaks for you cause I know what you are dealing with. I was there for years.

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Idied2x | @1died2x | Oct 22, 2022
In reply to @hoeewaa "I didn't know that dizziness was a symptom of neuropathy. My MD didn't mention it. I..." + (show)
@hoeewaa

I didn't know that dizziness was a symptom of neuropathy. My MD didn't mention it. I was wondering why I have been getting dizzy. I thought it was because I was smelling ant poison (attempting to rid the house of n invasion of ants). I am taking Gaapentin and so far it seems to help me sleep. I am not experiencing the pain in my shoulders and hands (at least for now). My neuropathy started with tingling in my shoulder and down to my hands. I believe the onset was from wearing a steel helmet everyday for 5 years while in Vietnam. I remember a grinding sound in my neck which disappeared when I left Vietnam.

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I too am a Vietnam Vet and service-connected for Non-diabetic neuropathy and agent orange related Parkinson's Disease PD. Are you seeing VA doctors? keep plugging away - I am more functional now than I have been in years. Do a lot of research and help your doctors and keep pushing until you get relief. Do not give up. If you have not done so see a VFW Service Officer. You are not in this alone.

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nitsirk | @nitsirk | Oct 23, 2022
In reply to @pamelaz "I have pins and needles and can hardly walk." + (show)
@pamelaz

I have pins and needles and can hardly walk.

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Yes, its annoyingly named, as most people dont realise just how disabling full on needles really is!

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hoeewaa | @hoeewaa | Oct 23, 2022
In reply to @centre "Just a note to thank-you for your service and to suggest that (if you haven’t already)..." + (show)
@centre

Just a note to thank-you for your service and to suggest that (if you haven’t already) to contact your county Veterans office (in my county it’s with the Area Agency on Aging) to find out about financial benefits available for COMBAT veterans. My dad’s combat service (WWII) caused their real estate taxes to never increase after he retired (NJ), my brother-in-law’s combat service (Vietnam) has provided for full payment of the real estate taxes for his widow (MA). There is a Home Care aide benefit available for combat veterans too. Please check it out if you haven’t already.

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Thank you for your reply/advise, at the present the VA is giving me care to investigate the dizziness and bells ringing in my ear. However, I will try to find out if there are benefits I am unaware of in California.!

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pkh3381 | @pkh3381 | Sep 24 8:24am

I have had PN for many years now, but the symptoms in my feet and calves have gotten much worse recently. I had an experience just the other night. I was in bed [not sleeping] and remembered I had something to do in my office, so I was waling to the office. I was almost there and all of a sudden both of my legs went numb and exxtremely weak. Luckily, there was a table there to lean on for stability or I would have fallen. In all the years I have had PN, this has never happened, but I have been especially worried about the nerve damage recently. I was going to make a Dr appt, but it is so hard to really get his attention. He tells me I have "mild" PN, but the symptoms definitely do not feel like mild PN, and I am a tough old broad with a high pain tolerance! Thanks for sharing!
P

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