Just checked out your Polymyositis link. I don't think so but I might have the slower onset one. I do find it almost impossible to rise from sitting position often and have many of the symptoms but not the associated problems in neck and shoulders. And nowhere does it mention peripheral neuropathy - my most problematic symtom. Thanks though - very interesting to learn about it and not ruling it out yet!

Hi Mat

It's good to read you're making some headway towards a diagnosis. Don't be concerned about there being no mention of PN in relation to Polymyositis - it's not unknown for PN to develop secondary to autoimmune disorders but it's seldom mentioned in literature or discussed by doctors, (except maybe in the case of Diabetes). This may be due to the fact that Neuropathy is classed as a neurological disorder and autoimmune diseases come under rheumatological, endocrine or immunological (or other) classifications and due to specialization the cross connections are missed.

I don't know if you have access to a Neuroendocrinologist in Scotland but this is a developing area of specialization that may help pinpoint a diagnosis. Unfortunately here in NZ Neuroendocrinologist's tend to be found mainly in the research labs (rather than clinical settings).

All the best for your continued search.

Thanks kiwi and enbloc for posting some info and explanations re possible alternative diagnosis which may be interesting for others searching.

You are all so knowledgeable and it really helps me comimg here always Bluesfan.

Having read up some more I'm thinking that I may have diffuse systemic scleroderma -.which also can cause small fibre neuropathy as part of secondary Sjogrens - or both diseases overlapping sometimes. My symptoms arrived together five years ago quite aggressively with mild Raynauds which corresponded with flares. I think CREST usually occurs in people who have had Raynauds for years but I didn't and so I think mine was one of the other kinds.

I think it would explain my hypertension, longstanding GORD and swallowing problems, and early stage atherosclerosis and the constipation and persistent yeast infection plus dryness and scarring below. Perhaps also the extra large kidney cyst and microscopic haematuria. Not sure I relate so much to polymyositis but we will see.

I am seeing an NHS endocrinologist the day after I see the rheumatologist next month. My friend sees him for her Addison's and I was referred to him by my GP for my Hashimoto's hypothyroidism. My friend thinks he's great. Perhaps I may just have the rediagnosis when I see him - in which case he might be helpful about more than treating my thyroid. If not I'm going to make a concerted effort to get the SFN investigated properly and will ask about him about neuroendocrinology. The reason I sought the input of an endo privately is because of the SFN.

I think (my son is in NZ presently) that Scotland and your country have lots in common. X

PS - the reason I don't think I have polymyositis is because most of my pain is in my tendons and joints rather than muscles. Also it all started in my hands and feet and PM usually affects the shoulders, hips and not the hands, knees or ankles or toes like mine. I do have trouble going from sitting to standing sometimes (can't!) but I had a pelvic X-ray recently which showed arthritis in my hips and lower back and this would explain.