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?