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Ok so... Hi all, I'm Autumn. I was Diagnosed with Optic Neuritis back in March. The eye doctor suggested I get an MRI of the brain. I think: "This is silly. I feel fine." I go get the MRI anyway, and it's clear. No lesions. Then... The storm hits. Numbness, tingling, burning, pins and needles in hands and feet, mostly left side. Urgency in urination. Literally would get up from toilet and feel like I had to pee but there was nothing. Severe hand tremors, worse on left side, weak and heavy legs, they felt like they were full of led sand. Doctors rule out every other possibility.

Diabetes, fibromyalgia, any form of cancer, any infection, vitamin levels checked, thyroid checked, hormones checked... You name it. They checked it. Then... I started feeling better. I just brushed it off, except... Now my legs are really painful and tight all along the backs of them. Hamstrings, calves and Achilles tendon. Hurts to walk, and my feet are pointing down a lot. Ruled out muscular dystrophy. Did an MRI of the spine to check for lesions... Also clear.

My hands feel like they are on fire again after a recent sinus infection, this is my third sinus infection in the span of all of this... Don't know if it's related, but my symptoms seem to get worse with infection.
My question is... Did I possibly get the MRI of the brain too soon? Should I push for another? Am I crazy?

I had clean mris for many years before they saw lesions (over 14 years) had at least one a year.
After a big relapse lesions showed on brain and spine.

Wow... Just wow. Doctors would really let me suffer for years? Decades? Without treatment? Because there were no lesions? That's just... Man. I don't even know how to handle that.

Before Jimmylegs gets in here. Yes, I have had a full screening of all possible vitamin and mineral levels. I've seen his posts, and I'm tired of doctors telling me it's Magnesium, vitamin D or potassium, only to do another blood test and find that it's fine. I don't know if I can handle symptoms like I have now for years. I already feel like I'm at my wits end. But... Thanks for the feedback though.

nutrient levels can look great on paper and still be terrible. lab 'normal' ranges are notoriously misleading. if you compare your own results to the targets on the nutrition summary post (ie link below) you could probably identify some action items where nutrients are concerned

Try eliminating food groups at a month at a time and see what effect it has. Personally I have had a profound reduction in symptoms by eliminating all cereals except a little rice now and again.

mrbarlow wrote:Try eliminating food groups at a month at a time and see what effect it has. Personally I have had a profound reduction in symptoms by eliminating all cereals except a little rice now and again.

Welcome to ThisIsMS, Autumn.

I second the suggestion by mrbarlow and add my suggestion that you expand and eliminate all forms of wheat, barley, and rye in addition to "all cereals." It will not hurt you to try this experiment for six weeks; and it may lead to the same "profound reduction in symptoms" that he has experienced.

Yeah see. I still can't get a question answered. My insulin levels, vitamin, mineral, nutrient and every other level is fine. Thanks for the lack of help.

I've also already messed with my diet. I would not come here if I had not exhausted every other possibility.

Well since you can't try on label treatments maybe you could try some off label ones, go see a naturo path get on a paleo style diet and perhaps get some low dose naltrexone to see if that helps. Also you could try helminths to treat your suspected ms, some of the new clinical trials are saying somewhere around 60% reduction in lesions. It costs somewhere around 3000 dollars but you can pay in increments and those numbers are better than any on label meds.

Right... So I've tried so many different things that I'm at my wits end. I'm depressed, and already on the verge of bankruptcy from the three inconclusive MRI's. can anyone out there, with some experience, answer my question? I'll ask it again: Can Multiple Sclerosis present before Lesions show on an MRI? Is this cause to have another MRI? And if I had one on my brain in June, when would be a good time to try again, if that is in fact something that an MS sufferer would do.

If this is just a dietary help page for MS sufferers, let me know and I will seek help elsewhere. I'm tired of nothing working. No diet, no vitamins, no minerals, no antibiotics, no crystals, no prayers, no acupuncture, no amount of doctors can help me, and I've seriously considered taking the numbness / pins and needles out with a bullet.

if you are on the verge of bankruptcy, then don't get another expensive inconclusive mri. it could take ages for the chronic broken processes to develop to the point where you hit all the items (eg the right pattern of lesions on mri) on the doc's checklist of mainstream diagnostic criteria.

here's the thing, and i know you are at your wit's end, we get it and many of us have been there... yes there are diagnostic criteria for ms. but, without going for yet another wildly expensive test, you can just take data you have on file right now, and see if you match an ms patient profile, or not.

so without trying anything like diet, let's just deal with pure information you already have, that could help you gain confidence re what is going on.

fact: ms patients have a known, researched, published set of nutrient issues. these do not form part of the mainstream diagnostic criteria, and at best are considered as part of a differential dx on a patient by patient basis.

given this fact, you could gain more confidence re having ms or developing it in future by examining your records to find out if they specifically match the profile of an average ms patient. if in fact your levels match those of a healthy control, then i would say you have even less reason to keep going after expensive ms tests.

i have yet to run into an ms patient, or any other patient for that matter, with perfectly healthy nutrient levels. i would be very interested to see if you are the first.

yes, on paper almost everyone's levels are 'fine'. but the sick ones are more often low-normal and the healthy ones high-normal. (or even just plain 'high' given the common pitfalls associated with lab testing).

Autumnrayne84 wrote:I'll ask it again: Can Multiple Sclerosis present before Lesions show on an MRI?

I believe LR1234 already answered that question.

Autumnrayne84 wrote:Is this cause to have another MRI?

Not if it's going to push you into bankruptcy.

Autumnrayne84 wrote:And if I had one on my brain in June, when would be a good time to try again, if that is in fact something that an MS sufferer would do.

Some MS patients get MRIs once a year. Others, like myself, haven't had an MRI in 10 years.

The fact that you were 1. diagnosed with optic neuritis, and 2. had such a variety of ms typical symptoms, suggests that you could very well have MS. Some fortunate people have one attack and then nothing further.

You didn't say whether you had a lumbar puncture. You also didn't say which country or region you live in. In the US, a neurologist will likely offer you MS meds before the diagnosis is conclusive. My understanding is that they are more conservative and slow to treat in the UK.

You aren't alone. MS 'limbo' is a common experience I have seen described by many MS patients online at different locations. My experience of it was short, but hellish. Re MRI's, you could wait a year, or you could get a second read of your brain scan, or you could see if you could get spinal MRI's. I had both cervical and thoracic lesions as well as on my brain. I believe your optic neuritis, plus spinal cord lesions would satisfy the 'distribution in space' requirement for diagnosis.

All the best.

You need to get a second opinion and see about a spinal tap.