Numbness but no Pain, Feet,legs,Arm,hands
 

Hello, writing from near Inverness, UK...Second Post,...very new to the Board.
I would welcome some comment/suggestions/opinion/advice......your Contributions, that I've read, on PN and everything related, seem to have created an Oasis in a Neuro Desert......thank you so much........ I will try to be brief but clear..

I've copies of MrsD, Liza Jane and Wing 42..(your Supplement Lists) and I'm keen to try the CoQ10, Acetyl L-Carnitine (basically, the supps route) but I am staying aware of the advice that there is no "one-size-fits-all" answer....I would be grateful for comment from any/all who generously/helpfully shared their Lists....

I Take no Meds (gradually stopped Antidepressant Mirtazapine prescription from Doc, (given as a matter of course to Idiopathic Neuropathy Patients in UK), I am 60, 165lbs, 6'1", non-Diabetic, not taking Chemo, not in any Pain now (Cervical Pain for 1st 4-5 months, then stopped..........)..and I know that so many "NeuroTalk" Contributors are struggling with Pain along with the PN........
only Symptom I experience is the overall, very,very slowly progressing Numbness.........feel I've really got to do "something," take advice and act...before it worsens....

initially all left side.....but now...quite intensely.... in both Feet, both Legs, Left Arm,Hand/Fingers (revived Music Career now trashed, as a result), gradually, numbness has slowly appeared in Right Hand/Fingers since January2008..nothing like the numbness intensity of the left hand fingers, so far....

I have been diagnosed with "Idiopathic Peripheral Neuropathy", caused on 1st August 2007, by 30-40mins, bent down to my left side, doing physical, repetitive", "Tugging" and pulling work, to remove a 6ft by 15ft swathe of Stubborn, thick, Bush-like, weed-roots...a lot of repetitive effort on each, individual root clump.....
Caused upper-left, Cervical pain (neck) within weeks of the "causal activity", but now gone, no other pain.
Various Tests, Cervical MRI, X-ray etc. have not shown the site or a cause that could be Treated......hence the Idiopathic tag, of course...

Just not over-confident about how to proceed....

thank you for all the input I have read, so far....

Ray

Hi Ray: Any new symptoms should be reviewed by your Dr again. The numbness is awful and frustrating. But it could stem from a new issue or your PN is increasing. Dont ever hesitate to get a re-exam.

Sensory GBS
 

It can be viral attack....

Is non-Med Neuropathy reversible with Supplements ?
 

Thanks for your reply....my original post was too long and unclear, I think.....I am simply trying to get opinion/info/advice as to whether the Supplements Route will be worthwhile pursuing when my Neuropathy has been caused Physically...30-40mins of repetitive pulling/tugging (non-disease caused)..not caused be Disease or Treatment of Disease...

ie Non-Diabetic, Non-Chemo (ie for Cancer etc) Non-Med (ie for other disease conditions)...only Major Symptoms are: Foot,leg,arm,hand Numbness, asssociated Balance problems and fatigue (from ME/CFS since childhood, which did'nt initiate the Neuropathy problem, though does'nt help it)...
I don't know what the NHS here in UK would re-exam...my Doc is of no help, says I might be stuck with it and previously dished out Antidepressants (I've stopped them)...when I'm looking for a Treatment Initiative for the real Problem....that's why I've begun Posting on Neuro Talk.

Viral cause of neuropathy?
 

Thank you for your reply Posting.....Not quite sure exactly what a Viral attack is or what it involves....ie what would cause it.....how would I Test for it......

The initial Neuropathy seems to have been caused by prolonged, Repetitive Physical Activity but I am interested in other possible Causal explanations.....Viral cause never occurred to me.....in what way might I have acquired a viral cause of the problem? ie Air-borne, perhaps?

Ray

The implication--
 

--of a neuropathy that results from prolonged physical labor is that the nerve compromise stems not from distal peripheral nerves, but from a spinal cord or nerve root mechanical compression. The latter is still considered a peripheral neuropathy, and is termed a radiculopathy--and is certainly a possibility.

Have your had imaging of your ENTIRE spine done, to look for compression? And exactly where are your symptoms now?

Thanks so much for your helpful reply....

Apart from a couple of Initial X-Rays and a Scan of my Frontal Brain....
The only "SPINE RELATED IMAGING" that I have had, has been one MRI SCAN of the CERVICAL (NECK) AREA.....

Presumably this was the only area focused on, because initially, though not immediately, I had begun to experience Pain, during night hours, in the upper left-central NECK..........(this stopped within a few months)...

WHERE ARE MY SYMPTOMS NOW?...The Main SYMPTOMS seem still to be NO PAIN ANYWHERE... but "WIDESPREAD, HEAVY NUMBNESS"..., BOTH FEET,BOTH LEGS,LEFT ARM,HAND/FINGERS, SOME LEFT-BODY, (RIGHT HAND NOT AS INTENSELY NUMB AS LEFT) RIGHT ARM MOSTLY NOT VERY NUMB YET......ALSO FEEL AS IF MENTALLY/PHYSICALLY "DRUNK" WHEN ON FOOT..DIFFICULTY IN WALKING (USE A STICK) TIRE VERY QUICKLY......

I was simply told, with a kind of irritated attitude, that Nothing was found from any imaging work, or any other tests (blood) that would show a "Cause" of the problem....

WOULD "IMAGING OF THE ENTIRE SPINE" BE A HUGELY EXPENSIVE EXERCISE, WHEN DONE AT A PRIVATE FACILITY?

.....THE "GENERAL PRACTICE" DOCTOR I'M SIGNED WITH CURRENTLY, DISCOURAGED ME FROM HAVING MORE SCAN IMAGING!? WHEN I SUGGESTED HIM REFERRING ME (necessary procedure) TO THE "COBALT APPEAL" FACILITY,I DISCOVERED ONLINE, BASED IN Cheltenham,England (Staffed by NHS Professionals with prices I could afford), IMPLYING, THOUGH NOT CLEARLY EXPLAINING, THAT IT WOULDN'T BE WORTHWHILE, WOULD'NT HELP WITH WHAT I WAS DEALING WITH!? ....

IT'S LIKE.."IT'S IDIOPATHIC, OUR HOSPITAL FACILITY TESTING CAN'T SHOW THE CAUSE..THEREFORE WE CAN'T/(ARE NOT GOING TO).. DO ANYTHING FURTHER"......OR HELP YOU MOVE ON FURTHER!!?......that's how it comes across to me!!
SO DEPRESSING........but it sems that this is what PN patients are still having to deal with...all the time....and we've just got to keep on pushing past it and sharing, in order to overcome it...

I apologise if this has all been too much info.....I feel that I'm close to a way forward and still learning how to edit.....
thanks again for your valuable help.....

Ray

I imagine--
 

--that getting a full MRI series of the spine--cervical, thoracic, lumbar--through a private clinic would be very expensive. But given your symptoms, I don't know why the NHS should be putting up such a fight over this (other than being cheap). The doctors there have to know that extremity weakness is nothing to trifle with, and that it can stem from problems anywhere along the spinal cord, as well as from factors that may be affecting peripheral nerves. (It is one of the sad aspects of neurological symptoms that the investigations into them are long and expensive, as very similar symptoms can result from widely divergent causes.)

If standard neurological testing is showing muscle weakness--and by that I mean the simple pushing, twisting, balance movements all neuros should have you perform as part of a normal exam--they really should be delving into this in more detail.

To Ray
 

Sounds like this could have been a job for a Chiropractor early in the piece after the initial insult - however not sure how beneficial that would be now. Perhaps so!

So you "had" ME in the past?
 

I'd direct you to this site, which is excellent..

http://www.ahummingbirdsguide.com/

This site is run by the daughter of a member of Neurotalk.

Your symptoms sound like Guillaine Barré syndrome. This is brought on by vaccines, or viral illnesses.

I am tending to think your problem has to do with some viral problem. Something you had, that was reactivated.
Viruses do reactivate when you are low in immune status.

Taking some zinc daily may help. I don't know what you have over there, but zinc monomethionine is the easiest to tolerate.

Viruses and vaccines are notorious triggers for some neuro problems. Since you don't show obvious pathology on testing, viruses remain an option.

"Plan B" needed to get around NHS(UK) obstructive attitude
 

I wanted further Scanning, simply for thoroughness and before trying anything else (Supps, Meds..)...and like you,.....I don't understand why my Primary Care Doctor is being obstructive re. a (seemingly formally required) referal for more MRI Spine Scanning,.... particularly as the Problem and the Symptoms are "Cause unknown" and not Trivial in Nature and also...when it won't cost anything to the NHS (UK)....I'm planning to do it at my own expense!!!!......obstructing me does'nt seem to make any sense!!!

I have checked online for Average European Scan Prices and can afford them.............I selected, online, a preferred Facility, "COBALT", in England but I am waiting for a more local, Private (UK) MRI Facility to get back to me via e-mail, on price....then all I can do is approach the Doctor again...I don't know if his attitude is based on Consultant's Report or what...but it should'nt stop me from organising and being referred for further Scans..surely!!?.......seems inhumane as well as being Illogical

Like many others with PN, I am now really struggling physically and its getting progressively worse...feel that I need to take some more investigative action, now!!........I know that this is happening in the UK but Absolutely "Any" Advice or Suggestions are Welcome.....
Ray

More MRI.....please Doc...was it something I said?
 

Thank you for your Post......Yes I remember Hummingbirds.....thanks for the Link, Site seems so much bigger, more info, now..got to go through it.....
My ME/CFS and the constant Mental/Physical fatigue (not many aches etc) began "before" I first started school, and has just continued, was on the lower end of the Scale initially....worsened the more effort was made, found necessary, as I grew up, got older.........no help from Docs here......

Couple of years back, the, then, latest "Genetic" info caught my eye, began thinking about where I fit in to the new 7 different varieties of ME/CFS, Research findings......your Viral possibility was suggested to me before and a search on that and Guillain Barre, read through online after your Post, kind of surprised me as to just how many Viral causes may be linked with ME/CFS.......I've sourced a couple of suppliers of Zinc Methionine online....and still thinking re Viral...

My current thoughts on the PN is......more MRI Scan Testing on the Spine, pronto, as the limb numbness symptoms and fatigue/balance, is getting much worse.....the MRI Testing Done only on my neck has always struck me as Minimal and it's been suggested in a helpful Post that a problem could be "anywhere" on the Spine....which is what I suspected....and now want checked

Doc has been unhelpful up to now re. more MRI work...but I need to get him on board somehow....I want to arrange a full spine Scan, which I would pay for...(NHS (UK) would take best part of a year to complete the necessary sequence) and I want to know asap, one way or another if there's Compression, impingement or whatever, before trying to move on...Doc has been very unhelpful about me doing this...which seems strange when the Cause is "unknown" and only minimal MRI Testing has been done......
thank you for these and any other thoughts and suggestions...all welcome.
Particularly as these Symptoms are worsening....

Ray

Went to Chiropractor in USA
 

[QUOTE Sounds like this could have been a job for a Chiropractor early in the piece after the initial insult - however not sure how beneficial that would be now. Perhaps so![QUOTE]

Megan thanks for Posting me....sorry for delay in replying,......

I went to the USA end of October 2008......did'nt include this in previous Posts, trying keep things as brief as possible.....saw Erin Elster DC (found online) Boulder, Colorado........went there because she specialises in UPPER CERVICAL CHIROPRACTIC HEALTHCARE.....
Mainly because my Physical-actvity-caused, PN numbness gave me pain in my Cervical (neck) area, initially, for a couple of months, then went away....

Thought that I may have put the two Cervical Vertebrae..........
(C1..ATLAS and C2 AXIS) out of alignment, as Erin Elster described, causing lasting neurological irritation.....Was in Boulder for 2 weeks.....

Repetition every 2-3 days for several weeks, minimum, seems to be the standard procedure.......my neck definitely felt looser and "different" after each Manipulation, though too early to feel any numbness reduction.... I initially went for 2 weeks...intending to return at the beginning of this year, if I felt that this looked like it might work.....

I would have returned but the British Pound Sterling has, since then, plunged in value from around $1.80 to $1.37 (today)...so I've had to shelve the idea, at least for the moment.......

and it's not just a case of finding the nearest "Chiropractor"....the UPPER CERVICAL Technique is not a standard Chiropractic Technique, it is taught in the US.........I'd quite like to try it again, though, for longer.....

tried to put Erin Elster Website address in but message would'nt transmit with it in the message...

Ray