Yes, But.....I'm Different , you see.....
 

I have a gripe.

It amazes me, when reading these posts, that so many newbies are desperate for answers to their questions, woes, problems, etc.
When a very knowledgeable member responds with sage advice, the person immediately says 'but that's not my case, I'm different"
Taking the advice asked for, is probably worse than hearing a diagnoses.
The person almost always refuses to accept the fact that the advice
is 'spot on' and they have to be the exception to the rule.
"That's not me because I........." seems to be their rule.

I think that it is a matter of acceptance.
While refusing to let PN get the better of us,, and not taking anything lying down, is part of how we have to think....... acceptance of the fact that we have this condition and have to modify our lives to some degree, and live around the problem -is paramount. Then we can get on with our lives knowing what we have to do, to make our lives bearable and 'normal'.
Until then, a sufferer is beating his head against the proverbial wall.
Having to be the different one, serves no practical purpose.
Accepting the advice they asked for, is to their best interest.
Live with it, and then...... get on with your life.

they are probably still in the process of learning to accept reality

excellant post......spot on.....except of course that it doesnt apply to me, im different!

Bob Thanks!
 

The 'different-ness', tho? Is what makes all the neuropathies sooo hard to diagnose.
Not to mention there are no consistent ways to describe pain levels nor clear cut causes and on and on and on...

Learning about neuropathies is first step to getting to a final step of accepting IT!
It's mostly chemistry and dna, with a slew of other vagaries thown into the mix just to make life messier than it already is.
There are soo many ways neuropathies get us both in onset and timing. Then living with it? With acceptance come coping mechanisms.
The vagaries are what make us different? Yet the results are the same.
What we do with the results if up to US!

Good hope to all! :hug::hug::hug::hug:'s - j

I think sometimes we can be so different yet so alike if that makes sense?Regardless of age,how the neuropathy happened,or where it is the feedback from members here in terms of meds,supplements,coping skills,etc has been so helpful to me. I often feel I benefit more here then at my doctors apt.
I felt a lot of what Bob is saying when I was new here so to the new members you are not alone. I hope you can benefit though from the boards like myself and others have.

As a new member, I was relieved to see that I was not alone, that I had people and situations to relate and associate with. Yes, we are all a bit different, but not alone. I find that reaching acceptance and coping is the main goal. Most of us reach this point, do great, then, for some the old cliche, a spanner is thown into the works. Coping mechanisms need a tune up
and then we go on with our lives. The challenge is to not get knocked back to square 1. That is why this forum is so very important.

If only the people begging for answers
would believe the answers they get
(from the old 'sages'), and accept the fact
that they must make changes to cope.

Acceptance is the key here,
and 'listening to your 'elders' advice.

I think, especially for people with weird neurlogical symptoms--
 

--the learning curve is quite long; the symptoms can be caused by so many etiologies.

People often come here with baffling symptoms and want simple, direct answers, when there may not be such things. Many of us are mysterious, multifactorial, and under-informed, at least at the start, and, unless we are very lucky, our doctor's don't typically help much. It takes time to transform into a proactive, searching, discriminating consumer of medical info and to parse the possibilities as more or less likely, and to eventually become a critical evaluator able to drive the investigatory and therapeutic protocol.

I remember back when my feet started so painfully. I thought it was due to my job on them for 14 hr days!

So I tend to be patient with newbies.

What I do not like, is when data, and facts are withheld during the early postings...which really affects how posters here can respond. When this happens now, I do not respond right away to them, and wait for more info.

Also some seem very very resistant to learning on their own.
We have over 4 yrs worth of experience and data collected here and the new members just have to do some homework in this area. We cannot act as substitute doctors for people visiting here. They have to accept that they have to be responsible for their own bodies and making decisions for themselves, whether it be to learn about testing and how to get tests, or whatever may exist to help them feel better or reduce pain/progression.

It think it is wise to not automatically accept advice a person receives from a doctor or from a member of this forum. Yes, you should do your own research and make your own decision.

Many people who do not have neuropathy have the same symptoms that are reported on this forum. There is a tendancy to blame neuropathy for all ailments that are reported.

This type of thinking also occurs on other boards here.
People tend to focus on one thing and blame it for everything once a diagnosis is given by a doctor.

MS patients, may be having blood sugar problems, on top of the MS and giving symptoms.
I've seen one person on RSD blame ear pain on RSD, when in fact it was a serious infection.
The TBI forum tends to blame many symptoms on their concussions which may be due to additional medical issues.

Medical issues can be very complex, overlap with each other, and when combined with lifestyle issues, or poor nutrition, the result can be extremely confusing.

I wonder how many people who come here are so immobilized by fear they do not know where to start. The amount of info available is daunting.
I also think some people want to be told they don't have PN outright. As if making that association will cure their symptoms and make it all go away. They will take to heart what they want to hear, regardless of who is giving the advise and if they can't get it here, they will go elsewhere. So when you tell them something that does not fit into their agenda, it will not be heeded. The other side of this spectrum is someone who wants PN over the many untreatable neuro diseases out there.

I visited this forum for weeks after learning I had PN before becoming a member. Learned lots, still learning. There is lots of solid I liked the way newbies were treated. I have been to some sites that were intolerant and dismissive to newbies. Love your posts mrsD.

steep
 

Newbie here, I have been without a computer for the past few years and I know I have a lot to catch up on, sometimes it takes a certain amount of floundering around to determine which questions to ask!

Have only been lurking around for a week of so and have already learned more here and on line in general than in 3 years of trying to obtain answers from Drs.
For example PCP(who has recently left clinic...yay) insisted symptoms in arms were due to nerve entrapment from arthritis in neck, I do have a little of that, had MRI and a course of physical therapy which helped a little but have learned I was right all along, problems are a lot more consistant with neuropathy. Referral to pain clinic also substantiated that but was disbelieved and treated like a hypochondriac for nearly 2 years.

Of course I still COULD be special....denial is the first stage leading to acceptance.

It is important too for newbies to understand:

There are over 100 causes of PN. Some are primary...those are the most scary IMO. The hereditary ones, and the autoimmune ones, toxic ones. Some toxic ones like thallium are incurable. And CMT still is in research stages. But these are much less common than the secondary ones.

Secondary are those due to compression, hypothyroid, diabetes, or other disease processes, nutritional deficiency. Autoimmune can cross over to this area too, depending. These can sometimes improve if the original disease process is addressed successfully.

Being afraid of any long standing, confusing, hard to diagnose medical problem is very stressful, and that is why boards like NeuroTalk exist, to offer information and support to defuse some of that fear.

CMT is --
 

in research stages as there is always research going on. There are many, many types of CMT. They are finding more all of the time. Most all of the types are inherited. Sometimes there can be a spontaneous mutation but it is rare.

Symptoms of CMT can be evident when you are young, old, or in-between. Or they might not be that evident but a person can still pass it on. Symptoms vary greatly even within the same family. There is DNA blood testing for many types of CMT but not all of them. Just because you do not test positive for it does not mean that you don't have it. It can mean that you have a type that they cannot test for. And DNA blood testing is very expensive especially if you have to do the whole panel of tests.

CMT is often misdiagnosed even today as something else such as polio, Fredrick's Ataxia, MS, and the like. It is very important to be seeing a neurologist who is an expert when it comes to CMT.

There is more information at the top of the page under PN tips, Supplements, Resources, etc.

Unhhhh.....
 

:)Yeah....... whatever HE said !! :eek::cool::wink::rolleyes::winky:
(thanks, Glenn ;))

I think I'm kinda glad I started this thread:)

regarding PN i have learnt everything from the internet. all of the seven neurologists i have seen in hong kong have been totally incompetent. the first one didn't recommend a blood test. the second one did, but did not test for B12. none of them mentioned blood sugar or an OGTT. i could go on but i won't as i now know that my experience is not uncommon. the most useful resource i have found has been this site. so thanks to everyone who contributes. and remember to be tolerant. it can be quite a frightening and confusing experience at the beginning, and it's hard to know who to listen to.

It's frustrating, though, when you try all, or at least most of the things that are suggested, and none of them seem to help. That can make you feel kind of different, especially when the suggestions seem to help most other people. But I'm glad to have the support from people who understand what having PN is like.

thats true. for 2 years i have tried everything. i have kept logs of supplements, activities, and diet, and still have no idea what makes some days worse than others.


i am usually at the same pain level each morning, and sometimes, like today, for no apparent reason the pain just slowly grows to an all encompassing crescendo, and all i can do is lay perfectly still like a rock for a couple of hours and focus on nothing but breathing until it subsides. sometimes it stops and sometimes it doesn't. it reaches an unbearable level about two or three times a week.

and then i am back to normal the next day. starting in the morning with mild pain, never knowing what will happen through the day.

My son was diagnosed with cerebral palsy when he was about 1 yr old. He had a hospital acquired systemic staph infection shortly after he was born which was thought to have possibly caused it. He is 38 yrs old, independent, mild cognitive deficits, severe speech impairment, partial paralysis of his vocal cords. He is strong and healthy, works part time. He never had a comprehensive neuro workup. He was seen as a young child and teen by neuros and we were basically told...move on with your life, nothing to do, which I guess really isn't bad advice. He has a progressive foot deformity since his mid 20's: clenched toes, hammer toes, wears his work boots out on the outer heel and back of the heel. We replace the work boot every 2 months. The arch looks strange. He has a wide base gait and slight limp like gait, and trips over his feet more than he should. As a child he walked on his toes. I might have ignored all of this had I not read these posts and looked for myself at the images of the feet. His internist just puts it all in the CP class.

Am I right that there is no simple blood test for CMT? I am interested in this because now 2 people in one nuclear family appear to have unusual neuro problems. I've been tested for everything. I do not fit the CMT profile because I have mild hyperreflexia (but my neuro says it could be from the disc herniations). I am going to bring this up with my doc, not for me, but I do not want him developing more problems as he gets older. He has compensated well and is is basically like a mature teenager. We have no other children. Am I over reacting?

Hi,

There is good coverage of CMT in the latest Quest magazine. If you do not get the magazine you can go to the MDA site.

http://www.mdausa.org and then click on Quest magazine. It is a good read.

I know of a person who they thought had CMT but indeed has cerebral palsy. I am not certain if this person also has CMT or not. It is possible to have CMT and other diseases as well. CMT is misdiagnosed to this day as something else.

A neurologist who knows CMT might be able to help you rule CMT in or out. I wish you well.

There are many conditions that have PN as a component. I think it is important to validate the PN, with the many possibilities that it can encompass, and there are many.

We do all have a unique DNA print, and yes, we are all special, then again, we are just one of almost 7 million.....a good number of us, with some kind of PN.

As a newbie, I resemble that remark!!! LOL... I'm actually glad that I've found this site... It's nice to hear from "like" people... Even though every one here is different, at least I don't feel like I'm a statistic... sounds like some people here at least know the cause of their neuropathy... I don't have the $$$ to get the genetic testing (At least $15k per shot)... I found it most troublesome to be an idiopathic (I call it idiodic) neuropathy number... I guess mainly because I don't know what caused it... I'm worried that my kids might have it... and don't want them to go thru what I've been experiencing for the past 5 years...

Ed,
Genetic neuropathy is in the minority of causes as there are over 200 known causes for neuropathy. Most of us fall into the overall general terms of :
toxic- anything from alcohol to penicilin shots or flu shots, exposure to chemical from the workplace to the garden, and everything you can think of in between
compression- pinched discs to botched surgery that the surgeon won't admit to
environmental- something causes an allergy or some sort of reaction that acts as a trigger
inherited- the biggest group is middle European klineage and descendants, but is not exclusive there
and a few other miscellaneous things.
'Glenntaj', here- has a lot of info on all of the causes

The main thing is to identify the triggers that cause the severity or onset of symptoms, identify the types of symptoms, and try to find a med or supplement, or something that helps alleviate symptoms & pain. since there is no cure, yet- searching for the cause can be an expensive road that could lead to a dead end, or at least a stop sign that says "Road under construction you can go no farther."
Be content to treat symptoms and not fret about whether your children will get it. Worry about yourself and get your head under control regarding acceptance and experience of treatment as to how to live as normal a life, with PN. If you had diabetes, you'd live with it -and the treatment necessary to live normally. You won't necessarily know why you got the diabetes, but you have it.
This is no different.

Interesting that you said "exposure to chemical from the workplace"... This started happening within 3 months of when my department moved from 1 building to a newer building. I'm wondering if something here (IE carpet, glue for carpet, paint) or something else here could be causing it? I have been tested for heavy metals...

I'm a software developer... so, I wouldn't be exposed to some toxic chemicals in other professions...

Many new buildings are filled with toxins...

Formaldehyde is one.
http://www.oxford.net/~steve/sick.htm
If you suspect formaldehyde, using Benfotiamine may help.

Some here have been discussing chlorine found in pools:

http://neurotalk.psychcentral.com/sh...light=chlorine

Also try going gluten free for a few weeks, see if that helps.

Also do you get alot of dry cleaning of clothes done? If so air out the clothing outside for 2 days before wearing.

Also the chemicals used by the cleaning crews in buildings,
at night when you are not there- or during the day, if they work around people while they are working at their jobs , could be a trigger too.

Bump up for Melody

I am a newbie and not sure where to begin: I had fusion of L4-5 spine and laminectomy almost 5 years ago. The surgeon said he had never seen such an angry red nerve. I was still left with pain. The doctor said to wait about 10 mos. or so and I might consider a stimulator implant. (did a trial about a year ago without success.)

During all this time I had been on narcotics to help with the pain. Eventually ended up with a Pain Specialist for the spine pain, as well as leg pain. Due to all the narcotics (oxycotin,percocet, plus) developed constipation which eventually caused a bladder prolapse. Within a week or so after the surgery for the bladder; developed swelling of feet and legs (edema). Then discoloration of the feet began (Stasis Dermatatis)
I thought the terrible burning pain in my feet &ankles was due to the Statsis and swelling. Leg pain as well. Had started difficulty balancing and started using a cane. I mentioned this to my internist/endocrinoligst.(had been hyperthroid eventually became hypothroid -take synthroid). He felt the burning pain,etc. was from my pheiphereal neuropathy. No one had mentioned this before. I began looking up info about the neuropathy. Also, was led to a website for Periphereal Neuropathy. I could see myself and things started to make sense. Also heard about mehyl B12,R-Lipoic Acid and B Complex. I started using these vitamins about 3 weeks ago. So far - no change. I see my doctor in a couple of weeks and have lab work done the week before. Called his office to inform them of the B12 vitamins and asked to have that added to my lab work.
Was thinking of trying Benfotiamine B1 because that was also mentioned. I am using these vitamins in an effort to help nerve regenerating. Am I on the right track using these vitamins? This is longer than anticipated; but Mrs. D, you had mentioned "newbies" leaving out info. Hope I didn't overdo it.

Mrs D is on holiday, just in case you are wondering why she hasnt replied to you.

My suspicion--
 

--is that your radiculopathy in the spine (radiculopathy refers to a subset of neuropathy that involves compression or compromise of nerve roots) is still involved, despite the operation. But your other situations may well be contributing to nerve pain now (hypothyroid, for example, is know to cause neuropathy, especially in narrow areas in which nerves have to pass through to extremities and are prone to compression, such as the carpal and tarsal tunnel areas).

The swelling may also be contributing; there is the "double crush hypothesis", in which multiple insults to nerve create symptoms that are more than the sum of their parts (you may have started with radiculopathy symptoms and now swelling, hypothyroid effects, etc., are exacerbating things).

You may also want to look at the Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome board here, which might be a possibility, given your surgical and other trauma:

http://neurotalk.psychcentral.com/forum21.html

I don't think any of the vitamins/supplements you've mentioned can hurt you in the doses mentioned; just make sure you take the B12 separately, apart from anything else, and apart from any food by a few hours, in order not to interfere with its absorption.

It has taken me seven years to accept my disease!
 

Hey Bob... I'm back! I love your advice, and I often hear you in my head when I'm doing things like "walking barefoot on the kitchen floor" or not sticking to my medications on a regular schedule.

I was diagnosed seven years ago. I am FINALLY accepting the fact that I will never wear high heels again. That I will probably never work a real job again. That I can't live in a 2 story house, and that no matter how much my brain "thinks" I can do, my body just isn't going to keep up!

Learn to accept it, make the adjustments, and your life will be a lot easier.
The biggest lesson this disease has taught me... and the hardest lesson, has been humility! Many of you who have been here a while know, asking for help for me has been the biggest challenge of my life! I finally got over that.

All of you here still guide me daily, even if I'm not here reading your messages. But that's why I'm back. I miss you all!

Thanks Glenn, I will check out the boards you mentioned. I am taking the Mehyl B12, the way you had suggested, as well as other vitamins you mentioned when we did previous posts. I was thinking of adding the Benfotiamlne B1. Do you think that might be of some help?
You have put things in prospective with all the other things I am dealing with. I have felt they all contributed to the continuous pain. I also am deficient in Vit D which the doctor has me taking extra D and checks with the lab work. My thyroid is checked along with TSH lab work every 4 - 6 mos. Coming to this site was the first time I had seen hypothroid playing a part of my sympthoms.
Pain is 24/7. Something else had been mentioned in some of the posts I have read since coming to this site. That is - Acceptance.That took a while; but along with a lot of prayer; am determined to reclaim my life as it is now and make the most of what I do have.

I was pretty terrified 1-1/2 years back when my symptoms started. I'm still a newbie, but I'm definitely in the acceptance stage right now. I have done quite a bit of research since then, but oddly enough just stumbled onto this site about a month ago. This turned out to be a blessing since I can now relate to people with similar problems that I am facing. I'm also hopeful I will learn and maybe in time offer my own advice.

Thanks to all especially the veterans in contributing so much to this community.