Originally Posted by Megan

Hi all,

It's a few weeks since I've dropped in but wanted to share the latest. I think last time I mentioned that a chance comment or something I read somewhere alluded to the fact that Peripheral Neuropathy can be a symptom of CFS/ME/FMS. Seeing that I had a whole constellation of new symptoms since August last year including PN I thought I'd pursue this angle. So like many of us driving our own diagnosis I went to an, 'ME/CFS/FMS believing GP' elsewhere, and he ordered a series of viral/bacterial type blood tests. Most significantly my Mycoplasma Pneumoniae titre came back quite elevated which in itself can, in a very small proportion of people, cause PN.

When I subsequently talked to my asthma nurse at my regular clinic visit and told her the unfolding of what I had found out and showed her the test results she said: "I feel quite sick, in fact I feel totally ill about what you have just told me." She also said that the medical team including herself, the GP and the respiratory physician had failed me completely, by being too blinkered in the way they had been looking at my symptoms for over one year and she apologised profusely and got up and gave me a hug!

And listen to this!! She also said that it was not my job to have to find out what was causing my health issues but their job... and they had failed!!!! That sure was validating!

She then called my regular GP into the appointment and told him that they had all "missed the boat" and gave him a copy of the two Mycoplasma tests I had done six weeks apart from independent doctors. He was clearly taken aback.

An hour or so later he called me on my mobile phone and said he was "most disturbed" by the conversation we had had that morning. He said he had got out all my notes after I left and made a timeline to see when this could have started.

I will be seeing him again tomorrow so will continue the conversation more deeply. I have had some treatment already but will be insisting on regular Mycoplasma Pneumoniae titres now to make sure this bug which has obviously become chronic in my system and has affected lots of organs IS KILLED - once and for all!

Hopefully after long term antibiotics or antimicrobials I may start to resume my former health.

So pleeease everyone look at obscure infectious agents being a possible cause of PN, especially if you have many symptoms or if you have a bad persistent cough.