I have peripheral neuropathy

[bedfordlodgers1]

I have not been in touch lately but have RA Lupus and peripheral neuropathy. Have seen Neuro specialist to have a brain scan as I now have faulty vision in my eyes. They are doing a spinal MRI as the RA seems to be attacking nerves. I wonder if anyone has similar problems, I wonder if it could be MS. I am so tired all the time but manage ok. I do not usually self diagnose but sometimes all the test take so long. Thankyou. Dido bedfordlodgers1

[Matilda7]

I've got RA, Sjogrens and peripheral neuropathy and have been having visual disturbances. I have a second ophthalmology appointment next week as something went wrong last time with the visual fields test. Had not occurred to me it could be MS! I do have some very odd symptoms, including Raynauds in my feet and hypersensitive skin.

[bedfordlodgers1 in reply to Matilda7]

Thank you for replying I don't know much about this peripheral thing but I am learning to live with it. Am always careful when I am out as I feel like I'm drunk sometimes!. Use a stick because my right ankle is waiting for surgery. Am seeing the eye man at Southampton hospital but I do not think they can help as it appears to be muscular. My sight is good really apart from when I am looking around for things, then I have to wait for my eyes to line up!. What a funny old thing this RA thing is. Dido.

[Hidden in reply to bedfordlodgers1]

I have been experiencing this symptom for 2 years now. It is awful because it really affects a person's confidence - stopping in the middle of busy streets trying to work out where a step is, looking up and feeling I'm falling, hurtling along feeling stoned or drunk without the fun.

All I can tell you is that I was diagnosed with seronegative RA five years ago. My new rheumatologist told the registrar that only aggressive, seropositive RA causes small fibre neuropathy so I must have something else. He suspected, from my bloods, that this was Sjogren's Syndrome. So I was given a lip biopsy which yielded very positive results. He has rediagnosed my primary disease as Sjogrens and suspects neurological involvement. Sjogrens can present very similarly to MS in some people.

I did have a lumbar puncture last year and was found to have paired oligloclonal bands -.which confirmed that I had a systemic process occurring (indicative of Lupus, Sjogrens, Vasculitis, MS but not RA). My brain MRI last year showed small vessel disease (SVID). Apparently this is found in primary Sjogrens too and I've just had another brain MRI to establish whether or not there is more white matter 18 months later. Not got the results yet though.

I think Matilda will be sick of me posting this link but it might possibly help you in your quest to find out what is causing your MS-like symptoms.

hopkinssjogrens.org/disease...

[bedfordlodgers1 in reply to Hidden]

I was wondering how you were getting on with your neuropathy. I have had 6 B12 injections and waiting for a foot operation but going to see the Neurologist tomorrow. Still feeling the same numbness in my legs and also eye Nystagmus. No one seems to know what the problem is but maybe I will find out tomorrow. I wish they could put a name to it as People must think I am neurotic!!. I think I will make up my own name for it . Nystaperiferal Arthritis, bit of a mouthful!

I do hope you are getting along ok. Thankyou for your information.

[joyce21248]

I have RA Lupus and peripheral neuropathy as well .I am having trouble with my vision and awful headaches. I would be interested to know how you get on after your MRI . I have had a brain MRI and it was fine x

[bedfordlodgers1 in reply to joyce21248]

Hello Joyce. I am waiting now for an MRI scan on my spine also an appointment at the eye hospital because of the eye bobbing etc. It all takes so long but in the meantime am slowing down a bit and throwing myself into a chair when I have had enough. Suddenly feeling old and very tired even a little depressed with the pain and frustration of it all. I am usually the one who is always cheery but this has got me down abit. Must not let it beat me so am trying to think positive. Hope you are doing the same. thankyou for your interest. Dido