Hi Yu Ping,

I may be able to explain why you may not have PN but neuropathic symptoms, what your Neurologist may mean by that.

Like you, my blood work, MRI, Neuropathist testings, etc. etc. have all come back negative. According to my Neurologist I do not have PN and she has no further need to see me. However, I have the symptoms, big time! I'm currently on Lyrica and Tramadol to control the pain.

What I'm trying now is a gluten-free diet. Since starting, many symptoms I've had most of my life have vanished, most within the first week or two. My Gynocologist (she is more open to ideas than the silly Neurologist) agrees that decades of ingesting gluten unaware that I'm intolerant has quite likely been the cause of the nerve damage.

So, there is one example of how I don't have PN, but as a result of a lifetime of gluten abuse I am now suffering from neuropathic symptoms.

Perhaps consider seeing a Naturopath or Dietician to investigate possible underlying allergic causes.

In the meantime, consider the pain medication. It's a temporary measure to give quality of life. I strongly believe that the stress our bodies are put through when in a painful situation can effect such things as blood pressure. How can our body heal if it's constantly responding to pain? But, that is just my belief and each to their own. I hope you get your answers soon.

Warm hug

Debbie

keep in mind that damage has to be to the large myelinated fibers and there has to be nerve damage to a certain extent to be detected by an electro myograpy (emg) or nerve conduction study (ncs). even though you have symptoms you may not have enough actual damage yet for it to be detected.
the same applies to tests for small fiber damage including skin biopsy. there has to be a certain amount of damage in percent tiles to confirm small fiber neuropathy. there have been quite a few people who have posted here who were negative in these tests, only to turn positive when retested at a later date.

Hi Debbie,

Thank you for giving me your experience. Yes, I did see a Naturopath last year when I decided to deal with my PN from a nutritional perspective. She did order an Iron blood test which came back normal and suggested some supplements to support my thyroid, hypertension and insomnia. I don't think she has a lot of experience in PN though.

I also started a Gluten free diet (not-so-strict) since beginning of this year. I don't normally eat a lot of pasta and bread. We also now make up our own GF porridge. What I really find it hard with the GF diet is to have gluten free sauces i.e. soy sauce, gravy and powder stock etc… I am having a blood test in 2 weeks to check gluten intolerance and my GP asked me to stop the GF diet for the time being to get an accurate reading. I haven't detected any worsening symptoms since I stopped the GF diet last Wed.

I understand the lifestyle does affect our health and it is interesting to note that most of the PN suffers are in their 4th and 5th decade of life. It says so much of the environmental issues and food we put into our body which overwhelms our "ageing" bodies. One of thing I noticed while reading through this site is many of people who have PN also have some kind of spinal problems. I too have a spinal issue, that makes me wonder if the previous injury somehow triggers the PN even though you are not experiencing any pain from your original injury (spine)????

Yes I am now more accepting and prepared to take medication if necessary to give me body a break from pain.

Thank you for sharing your thoughts with me. Yu Ping