Have just recently been diagnosed with peripheral neuropathy and carpal tunnel , i was diagnosed with pbc, sjogrens raynauds ra some yrs ago

[bridgetthemidget]

Could anyone suggest a specialist who would help in diagnosing the cause of these new problems so that i can consider treatment options. thanks.

[nearlyThere]

Dear bridgetthemidget

sorry to hear the diagnosis and unfortunately, I may not be of much help here but I have attended the National hospital of Neurology and Neurosurgery in Queen Square, London for tests for suspected peripheral neuropathy. Not sure if this would be an option for you or if they can recommend appropriate treatment.

Can I ask what tests were done to arrive at your diagnosis of peripheral neuropathy and what the symptons are?

I was referred with suspected neuropathy due to sore feet and can only walk for 30 minutes at most and that is with orthotics. However, the tests surprisingly proved negative and a year later no one can give me an explanation as to why I have sore feet everyday.

I hope you get some good treatment soon.

[AngelaGM in reply to nearlyThere]

I've had PBC for about 8yrs now. In the last few months, i've been waking in the morning with severe bone pain in my feet and stiff calfs. No one seems to know what is causing this or seems to care. I get out of bed and can just about walk to the bathroom, or should I say hobble. I feel like Ozzy Ozborn as I walk to the bathroom : /

[bridgetthemidget]

Thankyou for taking the time to reply to my question.To answer yours, I started experiencing the feeling of insects crawling on me, usually my legs.This was approx 18 months ago.These feelings gradually diminished to be replaced by pins and needles and pain starting in the soles of my feet ,radiating up my legs.I had also been told that my bone density had reduced significantly due to menopause,so I was referred to an orthopaedic surgeon.He felt that my problems were not spinal and sent me for nerve conductivity studies.The results showed a sensory axonal deficit.I then saw my rheumatologist who said he didnt feel the need to do further investigations.I disagree with this as i have now had a number of falls and I dont always have normal sensation(hot,cold etc).Iam now in the process of researching for centres of excellence in dealing with these problems. My GP will then provide the referral.You didnt mention whether you have other autoimmune conditions-as a lot of us seem to,I was wondering if RA could be responsible for your painful feet?

[nearlyThere in reply to bridgetthemidget]

Can't believe some of the comments made by medical consultants. I find your rheumatologist's comment bizarre. Of course you are right to do further investigations into easing your condition or at least inhibit the cause of the deficiency. Can the GP ask his colleagues for help on this?

I spent a fortune on private consultations - the liver consultant suggested the neurologist, who then suggested a rheumatologist who then suggested an ortopaedic surgeon. Tests were done for RA and Lupus which were negative and foot xrays were fine.

I have osteoporosis in my back, haemochromatosis and am menopausal (52 yrs).

GP sent me for a brain scan which showed a prominent pituitary but my pituitary blood tests are fine.So still without explanation for sore feet.

I hope you find the right centre for your condition very soon.

[kosy2 in reply to bridgetthemidget]

bridgetthemidget

Have you been tested for Multiple Sclerosis?

[Annflanagan]

Hi, i have to see a doctor about carpal tunel aswell this month, was dtx 3yrs ago in august with pbc, wonder are they connected.Ann

[bridgetthemidget]

Thanks for replying to my query. I have been doing some research myself and have come across a no: of articles which suggest that peripheral nerve damage can be linked to both PBC and sjogrens. Also in the bear facts this quarter the i-chip project has identified the gene IL12A as likely to be involved with both Pbc and MS and also coeliac disease. Perhaps further research will answer what we need to know.