neuropathy
 

I have just been officially diagnosed with moderate to severe neuropathy. I am 64 and not diabetic. no high chloresterol, no high blood pressure, and am very active. There is no pain involved, just a weird sensation. Neurologist says that nothing can be done and anyone who says different is just out for my money. While I am not in pain, I would still like to nip this in the bud and reverse the problem. And I am very confused as to why and how this could happen. Is it significant? Could it worsen? Primary Doc is indifferent to my concerns and neurologist says, oh well as long as there's medication, don't worry. I would like to avoid the medication if there is something else I could do. I don't want to wait to the point that there is pain or the weird sensation takes over my entire body.

I'm not quite sure how it can be moderate to severe if you don't have pain.. that doesn't make sense to me. I am totally bedridden because of PN and have a very very severe case--so yes, it can get a LOT worse. You are very very lucky--a weird sensation is not a lot to deal with, though I do know it is annoying.

I know you said you would like to avoid medications, but I have been told by many doctors that that is all that can be done for neuropathy. Others on this board have said otherwise and have tried physical therapy and other things--but I tried PT when my pain first started before I was diagnosed and it didn't help. I have been on countless medications for neuropathy and none have helped, so at this point my neurologist has told me that I have no choice but to just live with the pain because he can't do anything else to help me.

I'd ask your neurologist for other options besides medications--maybe physical therapy or something like that. I'm sure others will reply with other things that have helped them as well.

It can get worse, depending on the cause of neuropathy--do you know why you have neuropathy? Any ideas? Have your vitamin levels been checked?

Interestingly--
 

--a lot of neuros will label neruopathy "mild", "moderate" and "severe" in different ways than we would, based on degree of nerve damage.

Very often, to them "mild" neuropathy involves partial damage to the nerves, whereas "moderate" or "severe" involves actual nerve death. However, partial nerve damage often results in severe neural pain, especially in small-fiber syndromes, as the nerves are compromised but still alive enough to transmit signals, albeit erroneously, registering pain spontaneouysly even in the absence of painful stimuli (allodynia). They may also register a whole host of non-painful stimuli--tingling, shoots, presences of something on the skin in the absence of any actual presence--this is termed parastheses.

"Severe" neuropathy tends to involve nerve death; in many of those cases there is an absence of sensation at all, or numbness. While not everyone would agree, many would say that moment to moment the numbness is easier to tolerate symptomatically than nerve pain or parastheses. Of course, lack of sensation produces its own problems--we may have balance difficulties or lose our sense to pull away from truly dangerous stimuli, as we won't notice them.

I have both loss of sensation/numbness and pain.. depending on the spot on my foot. I have some pretty severe nerve damage that they are pretty sure is permanent--they said it is highly unlikely that it will ever heal. So when I said it is very severe, I did not just mean in terms of pain, though it is very extreme in terms of pain as well.

Weird sensation can mean many things. It's hard to describe by the few people I know personally who have it. Cramping isn't necessarily the right word and numbness implies no feeling so thats not right either. Maybe it's CRAMPNESS that's keeping me up tonight;)

Well said
 

This was extremely well said. I am going to save it and use it for the folks that "just don't get it......including some docs." I get tired of trying to explain why I hurt soooo bad when I look so good (healthy). Your explanation makes me think of the classifications for burns. 3rd degree burns sound the worst, but are actually painless because all of the nerves / nerve endings have been destroyed. 1st degree sounds harmless but is actually quite painful because the nerve endings have been damaged, but not destroyed. :You-Rock:

Questions..........
 

Some questions for all you neuropathy experts. I started with pin prick/bee sting typed feelings all over body (head to toe), not at the same time, but with only 30-60 seconds between each other. This was May '09, July '09 internal non-visable tremor on one side in calf of leg. EMG's were perfect. Dr. suggested non-length dependent SFN, blew off tremor. Gave me Gabapentin 900 mg. a day, works very well for sensations, not for tremor. Fast forward to today......wormy feelings, wet feelings, other hard to describe sensations, still have internal tremor. Wouldn't tremor mean motor fibres involved, which would be large fibre and should have shown on EMG? Parkinsons keeps coming to mind, but there is not test for it. By the way, I have had Spinal Tap,3 MRI's, lots of blood tests........nothing found. Do your sensations stop when you are sleeping, mine do, but start the second I awaken.

Any insight would be appreciated........I am confused, scared and annoyed to say the least! I am 52 years old.

Neurontin is....
 

a noted calcium depleter, which can cause or make worse muscle tremors
Prescribing info as follows:
http://www.pfizer.com/files/products/uspi_neurontin.pdf
Pay attention to any mineral depletions [usually in disguised terminology] and or muscle tremors.... This mite help you be aware of what 'might' happen? But likely doesn't for most.
Go further up in the forums about Supplements and look up what's been discussed there. Calcium w/a balance of Magnesium and Vite D can and does help those tremors [I am a personal beneficiary!] But finding your balance of all you need, takes TIME! That means? Taking such a combo for a week is NOT gonna do the job? Try a month or two!
Having had a neuropathy soo bad at one point, that I COULD NOT FEEL A THING FROM MY FEET TO MY WAIST? And from my fingertips to mid-upper arm? Tho I can 'tingle'? And tingle badly at times? The fact that there ARE TINGLES/BURNING/HOT/COLD/ITCHES etc. are wonderful! Senses are essential to part of our BEING, as is SEEING, HEARING and SMELLING or TASTING! It is strange when you lose part of any one sense, let alone more? Meds tho can impair others too...in the attempt to 'get better'. Being aware is being prepaired!
I had the blowtorch and the nuke-freezer applied to my feet and hands simultaneously. So I DO know what you are going thru? It's scary as heck!
Read all the stickies and keep asking questions!
The MRI's are on target, good, no real 'physical damages'? The spinal taps? Tho? Depends on what they tested you FOR! There is a whole menu here:
http://neuromuscular.wustl.edu/alfindex.htm Go thru this index and all that is there? Be sure to have another web page available to 'look up' the med terms. Go from there and see which one 'fits' best for YOU so far.... THEN Don't be shy and ASK more questions! WE all here, keep asking them, and then ask them again!
DO NOT, EVER GIVE UP! If you do? You have let your docs give up on you. FIND docs who won't give up on you! I did! You can, and many others here have too! Ask, yourself? Were they the right tests? Then, harder still...DO you want to KNOW? I know I did, better to have a name/names for what I have than give up on ME! I hope you won't give up on YOU! I know you are tired going on the doc and test merry-go-round? I view it more like riding a roller coaster thru a thunderstorm! [And I have-don't ever want to repeat THAT] At Time tho? You have to do the 'stuffs' to get any rational answers, the right tests, then the right help! KEEP FIGHTING!
BTW? I can 'feel' to degrees 75% of that was 'dead' from 'before'. I DO consider myself very super lucky indeed! Hugs and HOPE! :hug::hug::hug:!-j