My name's Geraldine and this is my first post. Thank you for reading.
In Oct last year a nerve conduction study showed I had sensory axonal polyneuropathy. I also had positive Romberg's test and absent ankle reflexes. At the time I had no pain, mainly balance and gait probs. Since Feb I have had severe bilateral leg pain as well as inflammatory symptoms (?) - knee joint pain, RLS, psoriasis, mouth ulcers, shivering without fever, hot without fever, malar rash. I have had various blood tests and an MRI brain (to rule out MS) but nothing shows up - my ANA was only weakly positive (80 speckled) My doc admits to having 'run out of ideas', the original neuro dismissed me with '25% of these cases are idiopathic'. I would like to know what caused my neuropathy (in case it's something treatable) and other symptoms, as I think it is now affecting my hands and arms. Another GP suggested CIDP but there is no-one around here with any experience of it. Because I want to get to the bottom of it I feel I am being treated like a hypochondriac. The constant pain and feeling unwell is bad enough without it being devalued/dismissed.
So, dear reader, if this rings any bells with you, I would certainly appreciate your feedback. Thank you.
For right now - keep looking on the net, contact NIH Clinic in Bethesda Maryland, The Cleveland Clinic, for info or references -and Clinical trials - don't give up - there is someone out there to help you - don't let some drs lack of knowledge make you quit - there is always someone - takes time
Will be back to you
Last edited by moderator2; 07-06-2013 at 07:46 PM.
My message was pulled off because I quoted a source.I am not familiar with your particular strain of neuropathy. I have hereditary peripheral neuropathy - in my feet and lower legs - loss of sensation and it is progressing upward - I also have trouble with balance and it is difficult to walk with pain in my thighs. I now am having symptoms in my arms and hands
I would suggest you keep a daily log of symptoms, what they are and where they are located - It helped me to give doctors an idea of how my body is impacted.
Secondly, neuropathy is an unpredictable random appearing disease --- don't expect others to understand - that was the hardest thing for me to come to grips with.
Track your meds (if you change), stressful times, - any trigger. I urge you to keep reading and finding names of new therapies and read the Mayo Clinic and Neuropathy study results. When you find a particular place or dr (and no doctor knows everything - search till you find the doctor for you) you feel comfortable, bring your histry and journal. It can make all the difference in the world. The Article I quoted was from the Cleveland Clinic - you can go on line and get the Cleveland Clinic studies and reports on neuropathy. It was a good article! I didn't know about quotes not being allowed. Sorry
I wish I could offer you more, but never mind what others think - it is your body and pain and you need to keep looking ...... I made a number of drs angry when I quit them and looked elsewhere when they didn't really help or understand ....again do what is best for you. You can also go on line at sites where they encourage people to ask questions -- maybe you will find leads there. Granted it is a lot of work and no one person seems to have an answer that fits you, but keep looking and questioning. Elizabeth