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[/SIZE][COLOR=Teal] :angel: my mane is wesa and i was in tears when i read what you had posted. I am having all the same symtomes you are having. It came on almost a month ago and has hit me very hard. My feet go numb my legs are in so much pain it hurts to walk. my arms and hand hurt to lift up my son. My doctor siad the damage is permanat. They do not know why it happented to me but i too worry about lossing the ability to walk. I go to bed crying every night and the pain is so hard for me to handle. If it wasn't for my children I do not think I could go on.[QUOTE WESA1971][QUOTE=islandlady]I'm 54 and have just been diagnosed with idiopathic peripheral neuropathy (no known cause) - I'm satisfied that they tested every possible cause, including MRI of back, heavy metals, glucose tolerance, diabetes and much more. My feet and legs to the knee are tingly and numb at times. Facial tingling, etc.
I can't seem to get an answer on what the future will bring - will I end up in a wheelchair? How far will it go? It has come on in a matter of just a month or two.
Also, I nearly died from ciguaterra poison (a neuro toxin) 20 years ago. Could this have anything to do with that? No one seems to know or even have heard of ciguaterra.
HELP! Anyone have any information on any of the above, but especially personal knowledge about the progress and extent of disability? I don't mind being numb, or even pain, but really don't want to lose the ability to walk!
Thanks to all of you![/QUOTE][SIZE=2]
Wesa - I just got back from the U.S. where I had an MRI of my brain and spinal cord, and they were fine - no signs of MS. So that's great, but I'm still at square one as to what's causing this. I know exactly how you feel - aside from pain, numbness, etc. there is the mental anguish of not knowing what is happening to your body and why! So far my condition is "idiopathic", meaning they can't find out a cause, which means they can't stop it. And it continues to worsen. And, like you, I was told it would never get better, so I worry about every new pain/numb area, thinking that that is just another part of my body going...This is terrifying.
The only thing anyone has seen so far is that I have slightly elevated (high normal) mercury. Anyone out there know anything about that?? I rarely eat fish. Only a tuna salad sandwich about twice a month, if that.

[QUOTE=wesa1971][/SIZE][COLOR=Teal] :angel: my mane is wesa and i was in tears when i read what you had posted. I am having all the same symtomes you are having. It came on almost a month ago and has hit me very hard. My feet go numb my legs are in so much pain it hurts to walk. my arms and hand hurt to lift up my son. My doctor siad the damage is permanat. They do not know why it happented to me but i too worry about lossing the ability to walk. I go to bed crying every night and the pain is so hard for me to handle. If it wasn't for my children I do not think I could go on.[QUOTE WESA1971][SIZE=2][/QUOTE]
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I also do not yet know what is causing me to have neuropathy. I have it in my feet and legs. Before I got to the level of 1800 mgs. of neurontin each day I was in so much pain that I couldn't even sleep at night. I was first diagnosed by my neurologist as having syringomyelia after having full spinal MRI's. After going to UCLA to see a SM specialist, he informed me that I do not have this disorder after all and my neuro needs to do futher testing to see if I have Lupus or MS. I am praying that this doesn't go into my arms or hands, I love to do crocheting, knitting and sewing, so that would be such a dissapointment to me if this happens. I developed my PN all of a sudden this past spring and it came on with a vengence. Both of my feet went numb and then my ankles started hurting so bad, it felt like they had been run over by a semi-truck, it was terrible. I also had lots of swelling to the point that I had to quit my job this past summer. I am hoping that the tests will reveal what the cause is so that it can be treated and be kept from progressing. :angel:
I am so sorry to hear about your situation - and I share your fear about arms/hands. You sound a lot like me as far as how quickly it all came on. I have very similar symptoms, except the swelling. I know you're terrified of a possible MS or lupus diagnosis, but remember that both of those conditions are by no means a death sentence or even a "disable" sentence. I have friends with MS who you would never know there's anything going on and they have seen the best at Mayo and expect to live a full and normal lifespan. And there's a lot they can do for lupus too. What I'm really fearing is that I can't get a diagnosis and can't stop what's happening. I meet with another neuro dr. this week to review everything. I'm not expecting much, but can't stop trying to find out what is going on. Let me know what happens with your tests and don't give up! :wave:
[QUOTE=cbjordan]I also do not yet know what is causing me to have neuropathy. I have it in my feet and legs. Before I got to the level of 1800 mgs. of neurontin each day I was in so much pain that I couldn't even sleep at night. I was first diagnosed by my neurologist as having syringomyelia after having full spinal MRI's. After going to UCLA to see a SM specialist, he informed me that I do not have this disorder after all and my neuro needs to do futher testing to see if I have Lupus or MS. I am praying that this doesn't go into my arms or hands, I love to do crocheting, knitting and sewing, so that would be such a dissapointment to me if this happens. I developed my PN all of a sudden this past spring and it came on with a vengence. Both of my feet went numb and then my ankles started hurting so bad, it felt like they had been run over by a semi-truck, it was terrible. I also had lots of swelling to the point that I had to quit my job this past summer. I am hoping that the tests will reveal what the cause is so that it can be treated and be kept from progressing. :angel:[/QUOTE]
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Thanks for the information about a rheumatologist. No one has ever suggested I see one for any reason.

NO I do not currently use a cane or walker or wheel chair.

Gee, looks I get to post a list of all my aches & pains here. :bouncing:
That's a whole book!!!!! Here goes.. but first I promise I'll never make such a long post again, just this once.. I promise.
Age 56.
Female.
Sensory Axonal Peripheral Neuropathy. Cause unknown
To answer the question of what Dr's did I see to get DX:
It was in 93 maybe. I first went to Back Clinic and they did back X-rays and found nothing that could cause the problem and sent me to a Neurologist. They took a MRI (old fashion one in a long tunnel) on my body not my head. They did blood tests but I don't know which ones. He did some test using electrodes. That was it and so I got diagnosed.
Pretty much the same gauntlet in 99 when I had to re-prove it to a diff state. But this new Neurologist had the prior Neurologistís letter explaining his diagnosis. New Dr. did blood tests and nice modern open MRI of my lower back area and leg. That was it. Same diagnosis. Axonal Peripheral Neuropathy.
I never went through all this misdiagnosis and all these test many on this board have had to do.

I am not a diabetic.


It's currently in my right hip, leg and foot. Noone seems to know WHY I have it.
It simply appeared in aproximately '93
For the first 7 or 8 years that I had it I took Carbamazepherine (probably spelled wrong but it's Tegretol)) to control the pain/sensation.. and it worked fine but I became too, too exhausted & sleepy. Took sleep apnea tests at the hospital overnight and I did not have that. Neurologist suggested it was my Meds. So my med. was changed to Neurontin.
I take Neurontin now, but I only need a total of 800 MG per day to control the pain/sensation "enough". I don't want to take more than absolutely necessary you know.
Neurologists have never said to do anything to fix it..just take the pain masker... They have said there is no cure. They have said exercise did not make any diff either way. Since I do have a balance problem on that side because of the leg & foot the neurologist did say he recommends New Balance Shoes to help me maintain proper balance. But I didn't buy them because shoes covering the top of my foot, in the upper arch area naturally drive me insane.

~~~~~~~~
PN Symptom history "How it felt in the beginning before any pain meds..:
It is easy to remember the beginning.
I was driving home from work and stopped at a stop light.. uuummm breaks didn't seem very firm. However the car was safely stopped. I began to watch the breaks.. they definately felt all..well.. not there.
I took the car to the garage and they tested the breaks. Breaks were perfect. Nice firm breaks. Except my foot said they were squishy sloppy not there breaks. Car petals have never felt solid since then either. Then fairly soon after that started my feet fell asleep. Just the tingleing asleep feeling for days and they would NOT wake up.

Of course that lead to electrifying pain very shortly thereafter. In my feet, legs and hip. Yet at the same time my feet were burning up they were also frozen. VERY hard to describe. Like burning, freezeing, electructed sweating feet. I used to joke that my foot was like a melting ice cube.. sweating wet but frozen. I was wearing wool socks in the middle of the summer in Florida!
Ice cold but yet the skin felt sort of like it was crisp burning toast on the outside and numb inside. This is a very hard disability to describe isn't it?

I'd come home from work and wrap my heating pad around my burning/numb/frozen feet (the right foot was bad but there was some in the bottom of the left foot too) and the right leg too. That heat did ease the pain. I'd sleep with the heating pad on my hurting hip. Rolled over one night and burned my tummy on the stupid heating pad!
Somehow.. in the course of the 4 months it took to get a Diagnosis my fumbleing adventures in trying to ease the pain made it GO AWAY in the left foot and left hip area. But the right foot, leg and hip were terrible. I cold not even make the three toes on the right foot move at all.. the entire side of that foot was "dead" as far as muscles movement and balance was concerned.

Ten years later I still very much have it in the right hip, leg and foot. When I switched from Tegratol (sp) to Neurontin a couple years ago I actually began to get movement in my foot. I spent the whole day just wiggleing my toes the first day it was possible. I was showing the grandkids I could move my toes.. they thought it was silly. I can now move all the toes freely up and bend them down at will!!!! By golly that's improvement isn't it? Though I still can't seperate the smallest toe and it's neighbor from each other. My foot, of course, feels all the tingly electric feeling when it touches the petal so I've sort of developed an awareness of the correct pressures to use.. but I still press too hard/fast sometimes on that break. I am very careful about when & where I choose to drive.

You know I forgot about those heating pad days untill I typed this.. maybe I should wrap my right in heating pads again!

Pain is controlled for the most part by Neurontin. But I take a low dose. just 200 MG's 4 x a day = 800 total so I still always tingly and like bugs creeping on my skin. Of course the car petals are still squisy things..but I do drive anyway on dry roads on low traffic hours.
Shoes.. oh I hate socks and shoes.. they have to touch my skin! I don't want anything touching my skin. I don't step on things without getting sharp pain. I get leg cramps toe cramps. I find potassium tablets really do help the toe cramps. But no day passes without me taking my Neurontin on time.
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NOW in the last couple months I have had a very bad burning in the tip my left hand index finger.. like I burnt it, but I did not burn it and you can not see anything. I was assigned a new Primary care Dr by my ins so on the first visit I asked about this burning finger and she said "I think it's just a nerve problem" . well we had many things to discuss and it didn't sink in till I got home .. "I think it's just a nerve problem" :eek: OMG.. then for a couple weeks I'm getting the tingleing in my left arm..that cold creepy numb skin feeling.. left arm and left neck and up my left facial area. NOT pain.. just the "Creepies". This is what is promting me to finally look for ideas from others.. I think if a person is having a heart attack or stroke then pain is involved.. I have no pain when this happens just "numbing creepies" on your left arm and neck and face ..right???? Cold Creepy numbness that last one minute and leave. During that minute my arm is not obdiediant..it's more like a rubber arm (LOL) IS THIS MY PN SPREADING after all these years?????????? If so why am feeling it? I AM taking Neurontin. the cold numb creepy just happened again tonight.. it is so disconcerting and scary! But it only lasts a minute. DOES ANYONE HERE HAVE THIS SENSATION in the let arm and up the neck/face????

:confused:
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I have other disabilities not related to PN. (At least no Dr. has suggested any relationship.) I have had most of these problems for ages. None of it is new.

I have other disabilites not related to PN.
*Sensorineural hearing loss (both ears)
*Tinnitis.
*Osteoarthritis (both knees, pelvic bone)
*Misaligned knee bones (both knees)
* Mild disk Bulgeing in the Lumbar Spine
* Mild pulmonary fibrosis & emphysema
*Allergies to artificial flavor & color as well as allergic to salicylates (can never take aspirin) and of plenty of natural items you eat, drink or breath.
Allergies to many medications and environmental allergies includeing fumes/man-made fumes & scents.
*Dry Eye syndrome.
*de Quervain's Tenosynovitis ( a form of tendon problem) in both thumbs & wrists for which I have worn casts and I stretch my thumbs away from the hand to maintain this properly.
*I also have what they used to call 'Seed' Callouses on the bottom of my feet. I'm seeing a podiatrist soon..but haven't for many years. If He calls it something other than Seed.. I'll edit again.




SORRY for the long post.





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