vasculitis? something else?
 

hi - new here looking for advice from others.

had optic neuritis on left eye in nov 08. took iv steroids with oral taper. 2 mri's (one on diagnosis and follow up) with no lesions. vision improved 2 months later and now functional again but far from perfect. neuro says ms not probable.

march 09 - experienced similar symptoms to optic neuritis (eye pain with movements) but no loss of vision. pain goes away after 3 days. see neuro #2, neuro-opthamologist, visual evoked potential test. no suspision of optic neurits and confirm that left optic nerve is not 100pct. neuro #2 orders lumbar puncture and loads of blood work. everything comes back clear except positive for p-anca. checked again for p-anca (to see if false positive first time), kindney function and tests for c-anca, anti-pr3 and anti-mylo(?). all clear except p-anca again positive. of to rheumatologist who says all i ok (i.e. no vasculitis showing). at this point experiencing eye sorness behind eyeballs (not like optic neuritis as not associated with eye movements) and pain near eyebrows. rheumatologist not concerned.

may 09 - eye pain continues and new symptom - tingling feet/legs together with some strange aches in limbs off and on. back to neuro who can't explain. orders another mri (clear), nerve conduction test (clear) and puts me on beta blocker thinking maybe anxiety causing it (and i am axious). looking for 2nd opinion ref p-anca, so off to rheumo #2 and get another opinion on optic neuritis and tingly sensations. rheumo puts me on lycria which seems to have had some effect on tingly feelings but not stopped. eye pain continues.

had email consult with neuro #3 (family friend specializing in ms) who says again ms not probable but suggests small vessel microangiopathy but rheumo #2 says very unlikely as not showing significant symptoms. says needs another serious event like optic neuritis before any kind of treatment.

today - off to neuro on monday - going to discuss everything with him once again.

anybody have any suggestions? appreciate any assistance.

neil
36 yrs

Hi Neil.... I'd get tested for B12 levels and Vit D.

Low B12 can cause optic neuritis. If your report comes back below 500, I'd supplement. Some doctors follow old testing guidelines and call 150-400 normal, which is it not for many
people who present with neuro symptoms.

Please visit out peripheral neuropathy forum and Vitamin forum for more details.

hi mrs d - been taking time release b complex for years and tests all were ok but can't recall if above 400.

otherwise appointment at neuro shed no further light except try to ignore tingly legs and eye pain continues unexplained. suggested trying accupuncture for tingly legs and to see a opthamologist for the eyes.

rheumo on thursday - still would welcome any advice.

neil