Loss of skin sensation over entire body for over a decade

Brain and nerves
1

For the past 14 years, I have been experiencing a loss of sensation in the top layer of my skin.  Since the symptom started, I have been gone to see numerous doctors, including Neurologists, Rheumatologists, Pain Specialists, and Allergists.  None of them could find any causes.  I've have multiple blood work done, lumbar puncture, MRI's of the brain and neck, nerve conduction study....every result comes out normal.

I first noticed the symptoms after getting over a sinus infection.  When I would run my fingertips over my skin, I noticed a dull feeling over the skin...like running your finger tips over panty hoes covering your legs.

Here are a few other symptoms, I started experiencing about a year after the skin sensation loss began:

- Occasional muscle twitches over legs and arms

- Occasional nerve pain on legs and arms

I think that the last Neurologist that I had seen had suspected the symptoms to be MS, but he could not find any results in the tests to prove this.

I've always suspected it has something to do with a deficiency, but the only thing that I've know to come out as a low result was my Vitamin D.  This was several years ago and it was at 14.  I've been supplementing with 5,000 IU ever since and there have been no changes in my symptoms.  

I went to see a Pain Specialist about three years ago, and he prescribed me to take MSM, Kelp (Iodine), Boron, and Magnesium daily.  I've also added B-12 and a muli-vitamin.  I've been taking these supplements one and off since they were recommended to me, but now that I feel like my symptoms are not improving at all, I've been taking them everyday for the past four months (trying to give the supplements time to absorb into my body).

Another symptom that I feel that I should mention is that I've suffered from chronic jock itch for the past 20 years.  I've always felt that since I've never had this condition properly treated, that this has triggered my neurological symptoms.  I've mentioned this to the doctors and they just say that they doubt that jock itch is the cause...but I still have not been given a diagnosis of what the neurological symptoms is.

The skin issue has gotten so bad that it's now hard to tell when I need to go the restroom.  Before I could get used to the skin issue, but now that it's really interfering with my quality of life, I am really concerned that this condition will never get better and will just continue to get worse.

Is there anyone that has an idea of what this condition is or how it can also be treated?  I'm at a loss and I'm at the point to where I'm desperate to try some sort of alternative treatments like Acupuncture or Spiritual healing.

Any advice is greatly appreciated.

2

Dear Theresa

I have had very similar symtoms for 13 years now, although, so far, thankfully, only in the lower part of my body.  Whilst I know when I need to pee, I can't always tell when I'm going or have finished.  And I suspect that, rather than the jock itch being a CAUSE of the neuropathy, they possibly are caused by the same thing.  The jock itch, like athletes foot and various other 'itchy' things is a result of yeast infections, which are often linked with perforations in the lining of the bowel.  I've been tested for every deficiency under the sun and a few were found but even when they were corrected by supplements it seemed to have no impact on symptoms (possibly too late?)  Do you have food intolerances?  I've had a lot and they are linked to the yeast infections and, I suspect, to the neuropathy, not as a cause but having a common cause in the brain.  I was told by the neurologist that, with small fibre neuropathy, which is what the loss of skin sensation is, investigations are too complex and unrewarding,.  I interpreted this as meaning she would have to take my brain apart to find the cause!!  Somewhere in the neuropathic system of the brain or spinal cord something has gone wrong but it's not easy to find.  I've just had to learn to live with it and get on with life.  All the money I've spent on diagnoses and possible solutions hasn't really yielded anything.  James

3

Hi James,

Thank you for sharing your story.  I am also frustrated with the fact that I’ve spent thousands of dollars on treatments that have not helped at all.

As for the food intolerances, I don’t think that I have many.  I had gotten food allergy testing done a few years ago, but the results did not show many responses.  I am slightly lactose intolerant, but that’s about it.

I’m currently seeing an alternative medicine practitioner; she currently has me taking some herbal remedies and other supplements that she feels may help with my symptoms.  I just keep praying that something will eventually help with these issues.

Have your symptoms gotten better over time and then get worse again, or have your symptoms pretty much been stayed same?  What do you think is the cause of your symptoms?  Or what happened before your symptoms started? 

Sorry for all of the questions.  It’s very rare that I find someone with similar symptoms as mines.  When I look up these symptoms online, I don’t find many stories of people with these issues. 

The most similar one that I did find recently was one woman who was suffering from reduced sensation of touch for four years.  After trial and error, she medicated herself with B12 (methylcobalamin) supplements for 3 months and her symptoms disappeared.  A story like this does give me some hope, but in my situation, I recently had my B12 checked and my GP actually told me that I was way above the normal range, and to stopped supplementing with the B12 supplements I was taking.

I try to accept what’s happening with my body, but each day gets harder because I'm only 36 y.o., and I keep thinking this will lead to something else going wrong with my body. 

I’m just ready to wake up one morning and actually see a change for the better when it comes to these crazy symptoms.

4

Hi, Teresa

Yes the whole process is frustrating and you can spend a lot of money, with very little result.  I tried the B12 thing and other supplements but they made no difference.  

I've recently been researching the human microbiome - gut flora.  There are so many illnesses caused by poor gut flora, especially not having a diverse enough population. And I discovered that neuropathy may be one symptom, along with lots of auto-immune diseases.  If that's the case, then it links with my food intolerances and leaky gut, which I've had treatment for and which is a lot better.  In researching all of this I came across Dr Axe's website - he does an interesting webinar or two.  I learnt lots and took loads of notes and have been changing my diet.  (The only pain with him is that he then sends you daily emails, trying to sell stuff!)  I don't think having a really pure diet will stop the neuropathy - I think I have to live with the symptoms - but it's quite possible that this was the original cause of the problem.

No, my symptoms have never changed much, except in small degrees.  I find that if I've had quite a bit of alcohol it's sometimes worse the next day - eg instead of feeling like cotton wool my feet feel like blocks of wood. And occasionally there are additional twitches or odd sensations.  But generally the symptoms haven't really changed.

James