Hi everyone I have looked at the many posts on this forum over the past few weeks and have decided to join the community in the hope that I can get some helpful advice from other members on here, and of course give some advice where necessary.

I will run through a description of what I have been suffering.Even smoking a cigarette sometimes, but not every time, makes the symptoms worse which they never used to do before this year. Also alcohol seems to exacerbate the problem as well, again only sometimes, other times alcohol will not produce the numbness/altered sensations etc.

I have been to a neurologist in June and they went through my history and the usual tests (testing my reflexes etc) and also sent off for quite a comprehensive set of blood tests and also an MRI of the brain and cervical spine. I went to see the neurologist again yesterday and all the results were fine, he has now booked me to have an electrical nerve test (whatever that is!) and some more bloodwork to do with the peripheral limbs ,but I have to wait 4 months for an appointment (good old british NHS system) . He is already talking about “managing the symptoms” and I haven’t even got a diagnosis yet. It is starting to worry me and affecting my life more and more as the symptoms I am getting seem to be progressing (i.e. I can now get periods where I feel numb around my neck area and on my shins which I NEVER experienced before April this year).When I get bad days I can't bring myself to venture outside even. I would like to know if anyone has ever had toxic neuropathy as that is what im kind of guessing I have and I would like to know if it can heal itself if given time? Also another thing that is playing on my mind is that I don’t understand why does the numbness comes on all at once on areas of my body, i.e. my fingers and arm will feel numb/altered sensation, and at the same time my face goes numb/altered sensation and my back feels more numb, I cant figure out why.

Anyways here is a list of my symptoms and I would be very grateful for any information, by the way I take supplements and vitamins but have recently stopped as some were making the problems worse! Thanks in advance for looking


Intermittent Pain at back of eyeballs, noticeable when moving eyes side to side.

Arms/torso can sometimes feel slightly sore to the touch.

Tender spots that are very sore to touch appear on torso or arms, they usually disappear within 24 hours, again this happens intermittently.

Loss of sensation in top half area of back , first noticed end of July 2006 ,area went completely numb then gradually regained some sensation (but not 100%) after about 2 weeks (experienced sharp stabbing sensations in this 2 week period). Area never regained full sensation but did improve as time went on, a week after the loss of sensation occurred on the back I started to experience altered sensation on the face it felt like the skin was being pulled tight. Went completely numb again mid-april this year, again some sensation has returned but there is a patch that feels more numb than the other areas.

I first noticed a small numb patch on my left arm in 1998. Other numbness has occurred periodically on left side of face /arm/fingers and back of lower leg since 2000 but has also started to occur on right side of face and right arm and I am now experiencing altered sensations (the numbness on the right side first occurred after back area went numb in July 2006). Numbness seems to get worse in very hot, humid weather and symptoms tend to increase at night time.

Lower back pain that has gotten worse since 2005.

Periodically experience weakness in hands and sometimes feet, have experienced weakness in feet and shins more so over past 4 weeks, the weakness usually occurs when waking up in the morning and usually disappears when I get up.

I have permanent pins and needles in hands and feet, I first experienced intermittent tingling in my feet in 2002 but it turned into permanent tingling in 2006 which is when I also developed it in my hands.


Thanks again for looking

Mark

Hi, Mark.

Nutrient deficiencies often cause problems like those eventually, even if a person does not smoke or drink. But if you smoke, you are at additional risk for that reason.

If you drink a whole lot and have done so for a long time, that is another big risk factor. If not, it is not.

Smoking alone depletes some usable B12. Other B vitamins can be interfered with by either.

If I were you, I would do a lot of reading on the vitamin forum here. I would concentrate first on B12 and B complex, and antioxidants. Regardless of what is happening to you, taking care of this issue will help you some, but it might be at the root of the problems.

If you can't stop smoking, you can still help yourself with nutrients.

rose

I am also pretty sure that i have PN from toxins but will never really know for sure. The most important thing is to stop being exposed to whatever toxins are harming you. You can get better over time if you do this and take other steps such as nutrition and exercize to heal over time. It isnt a rapid process of recovery usually.

my symptoms are nothing like yours. I have bilateral, and symmetrical numbness and pain in my hands and feet and lower legs. It may feel worse or better for periods of time but it never goes away in those areas and hasnt spread to other areas. From what research i did, and I may not be totally correct, but from what i understand nerve damage from toxins is usually distal first, hands and feet, symmetrical, relatively equal on both sides, and bilateral, both sides of feet or hands etc.

The electrical tests he or she is talking about is electromography/nerve conduction study, which is used to among other things detect PN in the long myelinated fibers. Evenif this test is negative it doesnt mean you dont have PN, it could be short fiber PN or it may not be progressed enough in the long fibers to be detectible in the long fibers yet. There are other tests to get in that case. As a matrer of fact if you check out www.lizajane.org you can get a better idea of possible and needed testing based on your type of PN.

Hopefully when you have your EMG/ncs they will check for impingement in the lumbar, cervical, and shoulder areas which could be causing intermittant symptoms.

Managing your symptoms is important while you search for a cause because it could be a very long search.

in your MIND and I believe that you will find that many here have been through that 'process' of having the problems [the getting WORSE part is the pits!] and then getting diagnosed..it seems to take a horridly long time, but believe me, as they learn more things about YOU and what's going on with YOU sometimes things can go too fast to asorb and understand. It's not only a scary prospect, it is one durned terrifying one!

The nerve conduction studies and all the other tests a neuro does are outlined in http://www.neuroexam.com/content.php?p=2
This site explains an introductory neuro exam, and all the aspects a neuro is looking at/for on the first thru dozenth visits. Since Neuropathies have over 200+ types and neuro conditions [probably with variations as well] are about 300+ [guess here on my part, sorry neuros] the WHOLE process is one of eliminating 'things' that can show on tests or nerve studies and MRI's and Bloodwork. The key here is to NARROW down what has caused your problems and then what is causing them to get worse.

Liza Jane's worksheets are a valuable tool for YOU during this process of exams and diagnosing. You could/should not state "Why aren't you doing test X or Y, as Liza Jane Says?" The 'sheets' have been put together by many PN'ers here who have arrived at their diagnosis/es due to the variety of things that can cause or affect PN. So The sheets are a roadmap. If after you've done a library load of reading, and can 'well, sorta' understand some of the terms...you can then ask your docs: What about M test or N test? Do you think it's of any worth for me? That way the docs think it's their idea.

As for nerve conduction studies...For me they were a no problem ! I felt nothing....for others who have some neves left, they seem to not only hurt like heck, but keep hurting well beyond. This isn't to put you off on them...they are a very key part of diagnosis. Just that THEY HAVE TO BE DONE! It's sounding like your docs are well on top of the above bargain basement disgnoses testings that are normally done.

Rose is right in encouraging you to take extra B-12, it is one key kingpin to help the nerves and the rest of the body heal.

Joe is correct as well. Even tho you may have had issues in the past, MANAGING THIS animal is a life long commitment. So, if a neuro prescribes 'anti-seizure' meds such as neurontin or Lyrica and some pain modifiers as well...Take them, take them on schedule and do it religiously. These meds modify our 'systems' to ease the pain. Going off schedules is more dangerous than being on them. Your docs will monitor you closesly. I suggest you keep a diary about your life, daily stresses, what you eat, and how much you do or overdo.....to keep track of how you feel, before during and after meds and therapies.

I also suggest that you read the 'stickies' at the top of the forum, and as many posts as you can handle to learn about US and how we deal with this all.. or not. If you ever have questions don't hesitate to ask openly or thru PM...
As for me, by way of background...I got 'mine' about 3 months following a 3 month bout of pneumonia...I was pretty healthy before all that, now? I am grateful I can still walk [short bits] and drive [again short bits] for others it can be truly scary. I don't think your docs are going to let you get to the truly scary stage.
I have found that most all folks here give more than they could ever get. They KNOW where you are now, and can appreciate all that being there means! Read, learn, ask questions, and make up your own mind as you find out more info.....
I sure hope this helps and is some small comfort or even a small hug of understanding... When no one knows...well It's a scary place to be! - j

Thanks for the information, I started taking supplements a while ago but found certain ones like calcium and magnesium actually made the problem worse and also acetyl l carnitine and alpha lipoic acid made the symptoms worse but only when the symptoms were noticable, when the symptoms have subsided somewhat (except for the tingling in hands and feet which are always present to varying degrees) then these supplements dont make anything worse,its very strange.

Rose, I have started taking Jarrow forumlas Methylcobalamin yesterday after my visit to the neurologist,I was holding back taking them until I had seen him incase he needed to do further B12 tests.I am taking 1mg a day,should that be enough to take to begin with? I have never been a heavy drinker or a heavy smoker, I have taken substances in the past though which I think may have caused these problems,thankfully I no longer take anything anymore.A harsh lesson learned.....

Joe, thanks for the info about the electrical test I now know what to expect in 4 months time.And what you were saying about toxic neuropathy being distal first, hands and feet, symmetrical, relatively equal on both sides, and bilateral, both sides of feet or hands seems to ring very true thats exactly how mine started.It wasn't one hand or one foot it was both sides at the same time BUT I also had it on my face and arm long before I noticed anything wrong with my feet or hands.I am really glad to hear that it may indeed heal itself over time, has your PN got any better?

Thanks for the post, it is so nice to see that people take the time to listen and offer advice, I don't feel so alone with it all anymore, I guess I am having a lot of tests performed which is a good thing.I thought that would be a matter of routine for everyone in the quest for a diagnosis? I know there are others on here that have very very scary symptoms and I am sorry to hear you have been inflicted with what sounds a very nasty form of the disease.
I will take on board what you and the other members tell me and I will also try and offer some help and support myself for others if I at all can, I understand that these forums are like support groups for people that are all affected in some way by this nasty disease and that we must all pull together for support and comfort in what,in my mind anyway are very VERY hard times.

You are the third person in the past month who has suggested keeping a diary of everything so I may just do that,at least I can see if anything makes it worse etc, I am lucky that I do not experience the kind of pain that I have read about elsewhere on this forum and on the net, I really REALLY hope that I never have to experience that kind of pain,it makes me run cold thinking about it. The sore spots that I get intermitantly gives an indication,I think, of what SEVERE pain is all about,im just thankful they clear up........

I am trying to see if there is a correlation between smokers and people who have PN.

So all anyone has to do is reply and say "yes I smoke, or have smoked at one time". Or you reply and say "NO".

Now I don't know if the diabetics should answer this question.

But a good way would be to reply (if you are a diabetic) and say "I'm diabetic and I smoke (Or don't smoke).

So everyone who is NOT a diabetic and has been diagnosed idiopathic, just reply

Yes, I smoke or have smoked,...... or No.

I'm just curious as to how many idiopathic people here have smoked in their lifetime.

Thanks, Melody.

P.S. This should be a very interesting thread.

Hi yes I do smoke, but not all the time

That to stop smoking could cause/create more stress than not doing so...
I happen to smoke...I state it flatly and without reservation - with the qualifiaction: That to quit smoking now could probably do more damage to my overall systems more than not smoking.
Besides It's the ONLY Vice I've left these days?
Honestly, in all my 'researches'...I have not seen one definitive connection between smoking and PN...other than potential vasucular aspects of which I at least have been vetted clean.
Soo, If I start to read DON't SMOKE posts here...I am gonna block them. Sure beats grinding the teeth!?

Honestly Melody, There ARE NO DOCUENTABLE correlations!!!!!!!!!!
All alleged science to date implies: If the horse has stripes, it MUST be a Zebra! Many other equine species have a stripe.

Other than implications of vascular constriction...nada -zero -zip zilch!

Mark - as you can gather, we are a community, with differing opinions about things...well, I guess you got to see one of my barrells...But, I seem to have a knack for finding particulars on various key medical issues...
If you read prior posts you will be able to get a 'take' on us who do vs. don't.
Keep heart and think clearly - that will get YOU thru! - j

There is NOT ONE SCIENTIFIC STUDY with any correlation
to smoking and PN !!
I am a smoker !
I am not idiopathic!
I have axonal sensory polyneuropathy caused by chemical toxins and alcohol.
I have smoked most of my adult life.
I have stopped smoking at times.
Cigarettes do not make my PN worse, or better.
I have no immediate plans to stop again, unless someone can prove, without a shadow of a doubt, that smoking will worsen my PN condition.
Ever since Dr. Everett Poofball was the Dr supreme of the USA--all the medical societies and organizations have banded together to include smoking in the 'Do not Do !!' list for EVERY condition and disease on the planet!!
Yes, smoking can contribute to many respiratory and circulatory ailments under the right conditions. I've known of 90 year old smokers who have smoked for 80 years (yes, since they were ten) and they do not have respiratory problems, they do not have cholesterol problems and their hearts are as strong as a strong 50 year old.
Every doctor in the USA will tell any smoker to stop smoking.
There are doctors who are smokers who tell thier patients to stop smoking....hypocrites !! BAH!! HUMBUG !!
They'll have to pry my last cigarette, from my cold, dead, hand!!
Cause it'll be from a fall, or a car accident, or some lightning strike that'll be my downfall.
Not cigarette smoking !!

(There, 'j' , how's that?)