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Old 05-13-2011, 06:40 PM   #1
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peripheral neuropathy, am I "done for" so to speak?

Hi everyone,

I have a much simpler question relative to my previous thread.

I have looked around, and it seems that peripheral neuropathy is incurable.

That is fine, I understand I will be living with this for the rest of my life.

However, I would like to know what has caused this (if possible) and what I can do to deter the symptoms.

My family doctor has'nt helped me in the least, believe's the symptoms I have listed are stress related. According to the doc's own words; "in my 20 years of experience these are stress related symptoms".

I do not agree ofcourse, this happened abrupty, from numbing sensations to pain to the touch, and to all sorts of other "permanent" symptoms that affect the way I think and the way I feel, not anything I would wish for any "stressed" out patient.

Quite the opposite, it is causing my stress.

This is why I am forced to turn to forums such as these.

I'm going in to see the Doctor again next week, all I would like to know from people who have made some progress what you have done/told the Doctor to get down to the bottom of your issue, I will do the same as for the past 9 years I have made none.


My Doctor has not diagnosed me with "peripheral neuropathy" status, but looking at others with peripheral neuropathy I think it is a strong indicator I do in fact have peripheral neuropathy.

I do not want to question my Doctors integrity, but it seems I have to do more.

Thank you for the responses!

 
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Old 05-13-2011, 10:59 PM   #2
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Re: peripheral neuropathy, am I "done for" so to speak?

Hi Machine - I didn't understand what part of your previous post was a quote from someone else's post and which part described your situation. If your doctor doesn't think you have neuropathy because your nerve conduction tests were negative, it may be that you have small fiber neuropathy (SFN) which doesn't show up on nerve conduction tests. Family doctors are not familiar with SFN and even many neurologists are not familiar with it because it is uncommon. Sounds like you haven't seen a neurologist, which should definitely have happened rather than a GP taking on treating you for your symptoms. A neurologist will test for all the causes of neuropathy, e.g., diabetes,prediabetes, heavey metals, nutritional deficiency, etc., may be able to help the neuropathy by correcting the cause. However many neuropathies are idiopathic, meaning the medical profession has not been able to figure out the cause. I seriously doubt that anyone could have these symptoms from stress. Doctors often say stress when they can't figure out what is wrong. No, you're not "done for." There are many helpful meds that help the symptoms of SFN, and once you get adequate medical help, you'll be on your way to dealing with the problem. Best to you, Ruby

 
Old 05-13-2011, 11:43 PM   #3
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Re: peripheral neuropathy, am I "done for" so to speak?

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Originally Posted by Ruby8 View Post
Hi Machine - I didn't understand what part of your previous post was a quote from someone else's post and which part described your situation. If your doctor doesn't think you have neuropathy because your nerve conduction tests were negative, it may be that you have small fiber neuropathy (SFN) which doesn't show up on nerve conduction tests. Family doctors are not familiar with SFN and even many neurologists are not familiar with it because it is uncommon. Sounds like you haven't seen a neurologist, which should definitely have happened rather than a GP taking on treating you for your symptoms. A neurologist will test for all the causes of neuropathy, e.g., diabetes,prediabetes, heavey metals, nutritional deficiency, etc., may be able to help the neuropathy by correcting the cause. However many neuropathies are idiopathic, meaning the medical profession has not been able to figure out the cause. I seriously doubt that anyone could have these symptoms from stress. Doctors often say stress when they can't figure out what is wrong. No, you're not "done for." There are many helpful meds that help the symptoms of SFN, and once you get adequate medical help, you'll be on your way to dealing with the problem. Best to you, Ruby
Hi Ruby,

Your help in this is much appreciated.

Firstly, I agree the Doctor is not at fault for anything (sorry if I made it sound like that).

I understand neurological studies are at their infancy due to its very complicated nature, so getting an answer is much more difficult and seeing is specialist is what I should have done in the first place.

I did not know specifically about SFN, but I read through it and it does translate/reflect closely with my condition.

I have one question in relation to the neurologist testing for possible causes; does a regular physical check-up at the doctor (which includes blood tests etc...) stack up against the type of checking that a neurologist would perform?

The reason I ask is because, I have been through several in depth blood tests, all which appear normal to the Doctor.

And also; if you are aware, is it possible that SFN can be caused by spinal (causing pinched nerves) abnormalities etc...?

Thanks again!

Machine

Last edited by machine; 05-13-2011 at 11:49 PM.

 
Old 05-13-2011, 11:48 PM   #4
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Re: peripheral neuropathy, am I "done for" so to speak?

Hi Ruby,

From my previous post, I included another commentators post which I found on this forum. To my surprise his symptoms matched mine. Here it is again (I highlight the matches in bold):

"I have been suffering from autonomic, motor, and sensory neuropathies for more than four months. My heart rate dropped by ~30bpm. My BP, usually ~115/75, is down to ~80/50. I get twitches all over my body all of the time. I get pins & needles sensations, shooting pains, and hyper-sensitive spots (excruciating pain with slightest touch), but my biggest complaint is the BURNING PAIN. Neurontin and Lyrica definitely diminish it, but prolonged pressure increases the pain from simmering to SEARING. Does anyone else experience that? I can't sit for more than 10 minutes at a time. I have been waking up with numb arms for months. It freaks me out to find cold, dead limbs attached to my body! I've had TONS of blood work - all results normal. MRIs of my brain, c-spine, and lumbar region - all okay. Lumbar puncture - normal. EMG & NCV - fine. Next step - neuro-muscular specialist. Will keep you posted. I'm sorry you are suffering. I feel your pain! Sometimes, extreme temperatures (heating pad set to high/ice pack) applied to, or near, the site of the burning pain keep my nerves temporarily preoccupied so they don't register the pain as much. Tiger's Balm also provides some relief while my nerves focus on that icy-hot sensation. Scalding hot baths help as long as I can stand to be in the tub. If anyone else has any ideas, PLEASE submit them. Good luck to everyone, and be sure to post your results/diagnosis."

 
Old 05-14-2011, 10:12 PM   #5
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Re: peripheral neuropathy, am I "done for" so to speak?

Hi again Machine - A neurologist will test for many things that your GP has probably never looked at. For example, I think it was the test for heavy metals that was a 24-hr catch urine test. For me there were many more special tests, some for some scarey stuff like sarcoidosis and amyloidosis to rule those out. Perhaps a Lyme test will be done. You are like me in that all the usual bloodwork showed that I am the picture of perfect health--no wonder your doctor thinks it is nerves. Just be sure you find a neurologist familiar with neuropathy and small fiber neuropathy particularly. My SFN came on gradually and is progressing gradually, but I have heard of many others on this board with SFN where the onset was more dramatic. I don't know much about the effects of pinched nerves, but I don't believe that would cause the overall symptoms you are having. Good luck and do post your progress in getting some answers. - Ruby

 
Old 05-16-2011, 01:39 PM   #6
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Re: peripheral neuropathy, am I "done for" so to speak?

Ruby is on the money....my PN started w/pain on the bottom of my feet...then up a bit...saw GP doc..then foot doc then 1st Neurologist...did zap test...by then it was up my legs to mid calf....then 2nd Neurologist...another zap test..MAJOR blood work...and then they took some of my left ankle nerve to test.....by then mid calf and my feet burned bad/hands started to tingle...3rd neurologist and still get "we can't treat you until we know why you have these issues" which all my tests came back negative...and finally feet/legs to my almost knee...hands an issue to my almost wrists...my balance is AWFUL!!!!!!!!!!!!!!!!!!!!!!!!!!! I take 1200mg of Gab x 3 a day...it helps but does NOT fix....I just deal at this point...done being a ginney pig....hope it doesn't get worse and feel lucky to get out of bed everyday...knowing every minute I'm awake I'll hurt sucks but hell, there are sadly a LOT of people unable to even do what I can....just feel bad for my wife which is extra busy since there is so much I'm unable to help out w/around the house.

You MUST try and find out if there is a cure to why you are having your symptoms.
J

 
Old 05-16-2011, 02:25 PM   #7
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Re: peripheral neuropathy, am I "done for" so to speak?

Sorry to hear about your pain and suffering Rising Parrot. One thing that may be different for Machine is that he doesn't mention any balance issues. Balance problems are related to damage to long fiber nerves, and if a person has only their small fiber nerves affected, their balance and muscle strength may be normal. I've had SFN for over 2 years (much longer if you include prediagnosis), and my balance and muscle strength aren't affected so far. I've read that people with SFN often never develop damage to their long fiber nerves. Sure hope this holds true for me, as what Rising Parrot and others with balance problems go through is even a whole lot more to deal with. Also, as to pain, my combo of Gabapentin and Cymbalta keep me pretty much pain free. Many people are reluctant to take an antidepressant for neuropathic pain because they are afraid that implies they are depressed, which they are not and don't want to be labeled that way. Cymbalta is being used to such an extent for pain these days rather than depression that someone told me that the TV commercials for Cymbalta have even changed the emphasis. People who can't tolerate Cymbalta, often find significant pain relief with different types of tricylic antidepressants. Machine, like Rising Parrot may never pin down the cause of his neuropathy (30 to 40% of neuropathies are idiopathic), but he sure should explore all possibilities before giving up on finding a cause. Hugs to both of you. - Ruby

 
Old 05-16-2011, 03:41 PM   #8
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Re: peripheral neuropathy, am I "done for" so to speak?

Thanks Ruby.....not much I can do about it....so TRYING to take that attitude and move on w/life....as I tell my wife Kath....my pain is either bad or awful....on the awful days I just need to accept and do the best I can.

The balance issue w/me really gets to me...I got PN when I was in my late 30's...and now just getting laundry out is hard...I have to hold onto something to bend over....I hold onto a lot of things now...walking in snow was awful as you can't tell if the ground is level or whatnot...I got a walking stick from REI that I keep in my Jeep to use when we go out/I'm going to walk a lot....helps and also keeps most people out of my way...steps suck too...MUST hold onto the rails.

As far as the Cymbalta issue w/me is...Ruby is correct...for me it is a mental issue....if I try it I'd feel I am being labeled and I know that is wrong but its in my head otherwise...I do take my 3600mgs of Gab a day which I THINK helps....I'll start another thread about another issue....BUT the OP for sure needs to get more testing done to see what the real issue is and if there is something they can do about it to help.

 
Old 05-17-2011, 10:25 AM   #9
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Re: peripheral neuropathy, am I "done for" so to speak?

Machine, as others stated you need to ask for a referral to a neurologist. Don't be surprised if he has problems with the diagnosis either. They really live by the EMG/NCS. My SFN was in evidence for years before I got a diagnosis because these tests were negative. I finally had a sural nerve biopsy and this was able to show SFN. My EMG/NCS are now positive too, which unfortunately means there is also muscle damage.

Are you done for, well try not to look at it this way. SFN affects each person differently and you might not get as bad as others. Once diagnosised there are medications to control some of the pain. Good luck and keep believing that today will be a good day.

 
Old 05-17-2011, 06:23 PM   #10
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Re: peripheral neuropathy, am I "done for" so to speak?

Quote:
Originally Posted by Ruby8 View Post
Sorry to hear about your pain and suffering Rising Parrot. One thing that may be different for Machine is that he doesn't mention any balance issues. Balance problems are related to damage to long fiber nerves, and if a person has only their small fiber nerves affected, their balance and muscle strength may be normal. I've had SFN for over 2 years (much longer if you include prediagnosis), and my balance and muscle strength aren't affected so far. I've read that people with SFN often never develop damage to their long fiber nerves. Sure hope this holds true for me, as what Rising Parrot and others with balance problems go through is even a whole lot more to deal with. Also, as to pain, my combo of Gabapentin and Cymbalta keep me pretty much pain free. Many people are reluctant to take an antidepressant for neuropathic pain because they are afraid that implies they are depressed, which they are not and don't want to be labeled that way. Cymbalta is being used to such an extent for pain these days rather than depression that someone told me that the TV commercials for Cymbalta have even changed the emphasis. People who can't tolerate Cymbalta, often find significant pain relief with different types of tricylic antidepressants. Machine, like Rising Parrot may never pin down the cause of his neuropathy (30 to 40% of neuropathies are idiopathic), but he sure should explore all possibilities before giving up on finding a cause. Hugs to both of you. - Ruby
Hi Ruby and Rising Parrot,

When my symptoms started to appear bottom-up,traversed from my arms and legs fully "asleep" when I would wake up in any position, muscle weakness and twitching was next in line for me, blurred vision,and it did affect my coordination only a bit, up until this day. The walk on glass feeling appeared when I would walk on a mere carpet. There were 3 instances where I pulled my nerve while running and walking in in the back of my leg, one time it was very serious and I couldn't walk normally for weeks.
Lack of sleep or more sleep than usual is a complete disaster for me on a regular basis, and it affects the way I think and feel. Sleeping in different positions affects the way I feel the next day, as the pressure in the back of my head relative to the surface I believe causes circulatory blockage to my brain, which follows a close symptom called "brain fog" similar to what fibromyalgia symptoms experience, this is one of the worst feelings for me, the pain I have learned to manage. I could feel my heart pulse around my body. Sometimes, I have issues with my joints, moving around helps with this. Moving around and sports in general help these symptoms, but even sports are difficult as I have alot less endurance and fade away more quickly. Skin tone was also affected as I would be more susceptible to the Sun. Light in general was also an issue, it was and still is an annoyance, as to prefer dark over light.

 
Old 05-17-2011, 06:35 PM   #11
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Re: peripheral neuropathy, am I "done for" so to speak?

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Originally Posted by tingles View Post
Machine, as others stated you need to ask for a referral to a neurologist. Don't be surprised if he has problems with the diagnosis either. They really live by the EMG/NCS. My SFN was in evidence for years before I got a diagnosis because these tests were negative. I finally had a sural nerve biopsy and this was able to show SFN. My EMG/NCS are now positive too, which unfortunately means there is also muscle damage.

Are you done for, well try not to look at it this way. SFN affects each person differently and you might not get as bad as others. Once diagnosised there are medications to control some of the pain. Good luck and keep believing that today will be a good day.
Hi Tingles,

I am going to the doctor this week, and will ask for a referral. I am sure at this point that many of my symptoms are permanent, I have had this for 9 years it would take a miracle of some sort to take it back to the previous state, this is why I don't expect too much even from the Neurologist. I am just looking for some kind of guidance, I definetely don't want medication that will merely "mask" out my symptoms, if there is no other recommendation I will just continue on with my life. This is a complicated condition, neurological issues are probably the most complex issue man has ever tried to reverse engineer, so I don't expect too much at this point.

 
Old 05-17-2011, 06:52 PM   #12
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Re: peripheral neuropathy, am I "done for" so to speak?

I don't know but the symptoms started to appear after about 17 years of age.

I have tried to think hard and look back at what might have caused it, jotted notes down.

Here is a list of things/sequence of events unique to this time frame (around 6 months) before my symptoms started to appear:

I had tried a cigarrette, and the symptoms after this were nausea and just sickness for a few days.

I had definetely taken a flu-shot.

I inhaled some bug spray used for killing hornets nest which was settled next to my apartment.

After a trip to the theme park, I came home with the feeling that I was going to literally die. I went to the hospital and was diagnosed with acute form of Bronchitis. Doc prescribed anti-biotics. This went away in a few days.

I had a rash breakout in various parts of my body. This lasted for a bit.

I noted that when my symptoms were at their extreme, I had slighly swollen lymph nodes, which concerned me extremely as I thought I had an infection of some sort.

This was unsual to me, as I was not in any type of contact with anyone, and never used any drugs of any sort apart from smoking a cigarette once in a blue moon.

The extensive blood tests all passed, and I did many, many of them.

 
Old 05-18-2011, 10:11 AM   #13
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Re: peripheral neuropathy, am I "done for" so to speak?

I can understand your feelings about medications, I was at first hesitant. As for masking the symptoms it depends on which symptoms. The weakness and loss of ability to freely walk cannot be masked. The pain can be masked with Lyrica, cymbalta and possibly a narcotic.

The diagnosis can be the hard part. A neurologist will use an EMG/NCS to look for neuropathy but it will not show up in the early stages of SFN. They may also look for loss of reflexes in the knees and ankles. A last resort is a sural nerve biopsy but they do not like to do that much anymore as you lose sensation in part of your foot.

 
Old 05-18-2011, 10:35 AM   #14
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Re: peripheral neuropathy, am I "done for" so to speak?

Hi Machine - As Tingles has said, the meds only "mask" the pain, but that seems well worth it to me, and I am not a person that likes to take meds if at all possible. I didn't have the sural nerve biopsy, as my neurologist didn't think it was necessary. Once he believed me regarding my symptoms, he was able to make the diagnosis based on those symptoms. There was no reason to have the loss of feeling the biopsy entails (or other complications I have heard reported from that procedure). Regarding the events you mention that preceded your initial symptoms, I doubt that the medical science on SFN is complete enough to ever know if these events are related. Best, Ruby

 
Old 05-18-2011, 11:14 AM   #15
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Re: peripheral neuropathy, am I "done for" so to speak?

Ruby...I had a biopsy on my left ankle....and the damn thing bothers me every day....I know it always pretty much will...the info they learned from it was NOTHING!!!! My wife said to me before I had it done not to do it...but I thought MAYBE it would tell us something....sadly didn't.... almost daily I think how stupid I was to have it done

as far as meds..I HATE taking them(also take my thinners for my FFL)but don't have a choice...I want to work/try and enjoy life as much as I can...and just over the past few months have I tried to make living more my daily goal...not be so down about my issues and know they are there and just try to accept it....also know I'm VERY lucky compared to a LOT of people...my BIL is a paraplegic and he LIVES life like almost anyone I know...he is an someone i look at and try to do a little of what he does.

 
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