does this seem right?

[jerrygallow]

Sorry to go on about myself here. But does all this sound right to you?

I had optic neuritis (right eye), about nine years ago. It didn't resolve. Ten months later, ON again in both eyes. Left me visually impaired with very little resolution. (see halos at night as I described here, color loss, central vision field loss, kind of like looking through a smoky/dirty room). A few months later, small episode again in my left eye. Went on Tysabri. Small episode yet again a year or so later. Haven't been able to drive or work since all this started. No other MS progression or "typical" symptoms.

I don't have fatigue. I am not heat intolerant. While I have some brain fog and some numbness/tingling that comes and goes in hands and feet, I have no limitations in walking, balance, or any other neurological deficits. Other than vision, I feel basically normal.

Lumbar Puncture is normal. No lesions on spine. Only two or three lesions on brain "suggestive of MS" but that have not changed, even three years after stopping medication.

So I just went to the ER with yet another flair of vision problems (quick loss of vision, color, after several months of seeing halos and glare at night). They found no evidence of ON on the MRI. They found no progress in my brain MRI. No elevated blood inflammatory markers.

This all seems weird (atypical) to me. Yet here's what happens diagnosis wise. I went to the local hospital way back in the beginning. They sent me to the University Hospital in my state for a MS clinic because basically I think the Neuro wasn't quite sure if it was MS. The doctors at the clinic treated it like a patient transfer and just assumed MS because the local doctor thought MS. Then the radiologist report says the findings are "consistent with clinical picture of MS". But I don't have a clinical picture of MS. They base the diagnosis on the radiologist reports. I feel like everyone is just assuming everyone else knows what they are talking about.

Statistically if you have ON, you have about a 20 percent chance it will reoccur. I've had 5 episodes of ON with little or nothing else to say MS. My recovery has been unusually bad. The big thing that gets me is the halos. I can find no one else here who also has that experience. Should I be looking for something else besides MS after all these years? Something in addition? It seems the docs are all just an echo chamber where everyone assumes everyone else knows something more than they actually do.

[cheerleader]

Hey Jerry,
Sorry for your vision issues. No fun! Has any doctor ever discussed nonarteritic anterior ischemic optic neuropathy with you?

Given that you do not have CSF markers for myelin degradation, no new lesions---but continuing issues with your eyes, it might be something to investigate. I was corresponding with a young man who was told he had MS, and upon further testing, he had NAAION. It can develop in younger people, but more common over 50. He had halos and color loss. He's doing really well now--exercising more, eating better, reducing work stress, getting better sleep. Hasn't had an episode since, and his vision has improved. He never did go on any MS drugs that were being recommended.

Here's more info. It can be due to lowered blood pressure at night, sleep apnea, whole bunch o'stuff. It's been linked to interferons and viagra. Not immune related, it's vascular.

http://eyewiki.aao.org/Non-Arteritic_An ... hy_(NAION)

(BTW--I have faint halos, and have had vascular migraines since I was 12.)

hope it helps!
cheer

[1eye]

Same thing happened to me re radiologist. Nobody wants to say "it's MS". In some cases, they'll take the word of the radiologist, which is based on seeing the peculiar pattern of lesions in your brain. That pattern is centered around veins. Nobody will be able to tell you why, or why veins, not arteries. You might, if you do have it, see atrophy in your corpus callosum. I did. It might not be MS, and I think you should let them know you don't accept that diagnosis until someone shows you concrete proof, unspecified. Tell them you want specific tests that rule out everything it could possibly be. Normal Pressure Hydrocephalus. Hughes antiphospholipid syndrome. Lyme disease. numerous others, probably. It is misdiagnosed a scandalous percentage of times. But don't let the vampires ruin the veins in your arm.

Many of my tests, and the ones they do to suspected MS cases, are barbaric and painful. Spinaltaps. Nerve "conduction studies" where they stick a needle in a nerve you might have complained about and either listen to the signals with an audio amplifier, or connect the needle to a forbidding-looking computer screen, while they wiggle the needle around. Probably a lot of other stuff neither of us knows about. With a chronic progressive MS diagnosis, which most MS ends up as, after a decade or so, you become uninsurable. They will eventually offer you canes, walkers, wheelchairs, rehab, orthotics, etc. I had my driver's license taken away. If you have a choice, don't buy in. Listen to cheerleader. Exercise a lot. Walk a lot. Eat a lot of foods as cheerleader, Ashton Embry, and others tell you. That will probably leave you hungry for a while, but it beats having MS progression. Get certain supplements. Stay well clear of stress.

If it progresses and you see signs of loss of control of muscles, use those ones as much as you can. If they go altogether, you'll wish you had. Certain things you can get, as foods or supplements, can help protect the brain's fine blood supply from getting porous, an area called the Blood-Brain Barrier because it keeps larger molecules and cells from your brain. Keep your blood flow strong and healthy.

[jerrygallow]

thank you both for the good information. I'll research these suggestions.