Widespread neuropathy

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For about one year now I have been experiencing neuropathy in multiple areas.  I first noticed some numbness in my left arm.  Within a few days I started to experience numbness all the way down the left side of my body and both legs.  In the early stages, I also experienced very intense headaches, unlike anything I had experienced before.  Over time I also experienced symptoms in my right arm, although not as intense.  I can feel a light burning sensation or irritation in the ulnar nerve of both arms, starting at the shoulder all the way down to my pinky finger. The sensations in my legs is stronger on the back of my legs and the bottoms of my feet.  The sensations also affect the back of my scalp and the left side of my face, although I have not experienced complete paralysis as some victims of Bell’s Palsy do.  I have not experienced vison problems, swallowing problems, or memory problems.

I have been tested for all of the usual suspects, including vitamin deficiencies, diabetes, and auto immune diseases like MS.  I have received a CAT Scan and MRI of the head and neck (with and without contrast).  I have also been tested for Lyme Disease – I had a couple a positive markers, but nothing strong enough for a positive diagnosis.  I do not have a history with anxiety and my doctors do not think my symptoms are in line with anxiety induced neuropathy.

The intensity of the symptoms comes and goes.  I have maintained a healthy lifestyle for many years (I’m 42 years old).  I have experimented with very strict anti-inflammatory diets, gluten-free, diary-free with no real progress.  I am fortunate to be able to continue a basic exercise program and feel like exercise may have a calming effect on my symptoms – if nothing else I’m sure there are psychological benefits.  At this point my doctors are calling my symptoms idiopathic (short for “we have no idea”) – which is not very reassuring.  Any thoughts on other paths worth investigating are welcomed.

 

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8 Replies

  • Posted

    Hi it's frustrating. These days with all the advance in medicine to be looking for answers.

    My suggestion would be for second opinion if possible.

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  • Posted

    Hey rob:  I'm having similiar symptoms and my recent EMG indicated nerve damage. Neuro is sending me to a larger facility for a 2nd opinion. Right now I am searching for a cause in order to stop it from progressing.  Same as you...been through all the bloodwork etc. and nobody is able to tell me why the legs are pulsating.  My hands and arms also feel weak although I am told that I have a good deal of strength. The original diagnosis was restless leg by one GP, but after a visit to the ER when the pulsating could be visibly seen through my jeans, the doc at that point labeled it peripheral neuropathy. The whole thing started late last summer with leg cramps at night, then a puffy feeling on pads of feet which I attributed to humidity. It is completely symmetrical...left side = right side.  I put myself on a gluten free diet without progress. I am not familiar w anxiety induced neuropathy.  This is severely affecting my sleep and as you know, the worst feeling is fear of the unknown.  I am in complete agreement w you regarding exercise...it is imperative.  I'm also seeing a naturopath whom I've had great success with in the past.  This might be another avenue you could pursue.  Did you have an EMG? Were you fully tested for the lyme co-infections as well?

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    • Posted

      Thanks for the reply.  Yes, I did do the EMG test early on.  I do want to pursue Lyme a little further to rule that out.  I'm also testing the waters with natural medicine, but it's a difficult space to navigate as there is quite a bit of misinformation out there.

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    • Posted

      Awhile back I was tested negative for Lyme by a GP.  A naturopath insisted it was false.  I returned to the GP and asked him to pursue it.  Sure enough, I was not tested for the co-infections and came up positive for ehrlichiosis. Since then, my lyme tests come back HIGH w PAST INFECTION. Honestly, I would investigate the lyme a bit further w an ID doc.  It's worth a shot...

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    • Posted

      hi i have been suffering numerous neuro,nerve,muscle and joint pains to mention just a few i was tested for lymes -neg then again a year later inc. co infections the co infection came back possitive (annaplasma) but even though my GP has refered me to 2 infectious disease specialist they dismissed it without even seeing me! so that seems to be the end of that. i have seen countless specialist over 3 yrs lymes was the only thing that fitted. im left to suffer a "mistery" illness that has progressed and causes constant pain and ditress ive gone from being an outdoor active woman to being housebound strugling to even keep my balance to walk from 1 room to another

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    • Posted

      Geez Vicky, what is it about the co-infections that they dismiss so easily??!!  The ID doc compared ehrilichiosis to a cold vs lyme as the flu and blatanly stated that this co-infection is NOT lyme. I'm not familiar with annaplasmosis but asked to be tested for babesia which came negative. I assume you had the western blot? Although everyone is dismissing this for me as well...I'm still not convinced that my "mystery" illness isn't lyme. Peripheral neuropathy- pulsating/twitching, weakness in arms/legs...pleez...DO NOT GIVE UP!  This is YOUR body girl and you know it best!. I'm noticing that neurologists are not familiar w this disease and refer to an ID doc. His findings are not the end of the road. What about seeking out a good naturopath,  These docs are totally in tune w the body and might very well help you.  I know mine has a method of treating lyme and I might very well ask him to do this without a diagnosis.

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    • Posted

      hi jan, yes i did finaly have the western blot -neg. none of my GPs or any specialist i have seen seem to know anything about lymes other than the obvious bite,rash and 2 weeks antibiotics. is a naturopath someone who can be seen on the NHS i seem to think they are private alternative medicine doctors ?? i am reluctant to see any private clinic who would take advantage ( im sure this isnt always the case but knowing the luck ive had thats exactly what would happen) any advice on this would be very helpfull.i hope you get the help and treatment you need
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  • Posted

    Hi, Rob, seems like you are exoeriencing what I am experiencing at this time, I have 28 years of Osteoarthritis, and now limping and cannot do a lot of driving.

    My case is referred to ALS CLINIC LUCKILY we have one in my city.  My ALS doctor

    is the same doctor who my late husband seen.  I am so scared back then but now, I have accepted this disease (whatever I have) right now.  My diagnose may come end of Nov.  By the way, I lost my husband to ALS it was only more than 6 mos, he just became paralyzed all of a sudden, and that is the reason why he was diagnosed with ALS. All his tests came good and he was clinically healthy. As I said had not for him became paralyzed suddenly, he will not have diagnose.  I am waiting for mine, whatever it is, hope I can get a diagnose soon as possible.

    Sorry about your condition. Prayers for you.

    Ellen H.

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