Hi Tinadyke,

I've had MS for over 40 years and have been following posts on MS message boards for 20 years. I hope you won't turn out to have MS but I am surprised that you mention a CT scan of the brain and not a brain MRI.

A CT scan can reveal many things but it is a brain MRI that is usually done, along with the 2 spinal MRI's you mention having. I hope you will ask your neurologist about this.

You might want to find a neurologist who is also an MS specialist.

If you have MS, the doctor will probably recommend that you start on one of the disease-modifying drugs (known as DMDs or DMT for disease-modifying therapy) as soon as possible. There are over a dozen of them now.

There have been many studies of diet and MS, but so far no diet has been shown to have an effect on MS although making sure that you're getting the nutrients your body needs, in the right proportions, is always important for general health. You want to stay as healthy as possible if you have MS because infections can cause flareups.

People nowadays have a nearly-normal life expectancy with MS, partly thanks to the generally better care for infections and other complications and partly due to the use of the disease-modifying drugs. Their effect is modest but it is real.

I hope you'll get some satisfactory answers soon!

Thank you all for your replies. Yes I was wondering about the ct scan myself. From everything I've read they only use mri's of the brain. I will mention this when I go back. I also just came from my optometrist ( he use to be a family doctor)on a follow up from having weak eye muscles, and he told me that sometimes you can have an mri and nothing will show up and do it again in 6 months and there are lesions. He said if I'm having lhermitte's sign there is definitely something causing it. Unlike my neuro who said it just happens to some people for no reason. Think I may just get a new neurologist because I can tell he's soon going to give up on me.

Your optometrist is right about MRIs but the brain MRI is the standard test for diagnosing MS, though it is sometimes hard to diagnose and people wait years before they're diagnosed.

Optometrists are fine for glasses prescriptions but they aren't qualified to diagnose and treat eye disorders. I hope you can see an ophthalmologist, who might want to do a visual fields test as well as a couple of other tests to get at the reasons for your double vision.

Sorry I meant to say ophthalmologist. He just looked in the back of my for optic neuritis, which was fine. He said he's going to leave it for the neurologist to figure out why I'm having trouble with my muscles and nerves. One of these years I will have it figured out haha.

Every time I've had an optic neuritis issue, a visual fields test has been done in addition to the eye exam.

You watch a dot of light that moves around on the screen and you signal when you're seeing the dot. Then your visual fields are plotted on a chart. They look for "holes" or "blind spots" in your visual field, and these can show up in either central or peripheral vision, or both.

Another test that can reveal optic neuritis is the visual evoked potentials test. You stare at a checkerboard pattern for a while. This test is usually ordered and done by a neurologist, not an ophthalmologist.

If the doctor looks into your eyes, the optic nerve can be visible, and some abnormalities in it can indicate optic neuritis but I'm fairly sure that these other tests are done to establish that diagnosis.

Your ophthalmologist was willing to put your case in the hands of the neurologist, who might want to order these tests.

If you aren't having eye symptoms, there may be no reason to do further tests.

I subscribe totally the words by @agate, I think you need a brain MRI looking for demyelinating lesions, but, even if lesions are found, the next step would be doing a lumbar puncture (spinal tap) to dismiss other diseases.

MS can have a lot of different symptoms, but a lot of diseases can have symtomps that resemble MS.
I was dx with MS last year, and have been on Tecfidera 1 year so far, no new lesions and no activity on the last MRI, so I'm doing good.

Good luck with your dx, we're here to help!

Hi there, Tinadyke. Echoing what others have said, you really need to see an MS Specialist and get MRIs of both your brain and probably optic nerve as well. And with all due respect to your family optometrist, you might want to find a good neuro-ophthalmologist. This doctor was key for me in both my diagnosis and in helping determining my path forward. I was dxed simply because I had ON -- no other symptoms besides what comes along with that but the way my brain MRI lit up, you'd think that was hardly the case!! This is one of the things that makes this illness so difficult, it is often not black and white, some people are very symptomatic with little or nothing showing on an MRI and then there are people like me.

Well I called my family physician and told him I'm done with my current neurologist. I feel like we are just going in circles. My family doctor tells me he will send another referral to a hospital 300km away. I'm fine with that but then he says they may refuse to see me, and will probably send a referral to the ms specialist closest to me. Thats great but the wait time is 2 years! I'm pretty sure I'm going to have to fall and break something before anymore is done ( my legs keep giving out). The lhermitte's sign is what has me stumped. I don't understand how I can have this now for hmm 6mths maybe?! And have a clean cervical and thoracic mri. If its not structural then what's causing it. It makes no sense from what I've read about it. Thank you all for your replies

A wait of 2 years to see an MS specialist????

That's really unacceptable. There's an MS Society where you are, I think? Have you tried contacting them and asking them to verify that the wait is really that long, and then asking them if anything can be done to change that situation?

I had lots of problems with Lhermitte's sign in the first year or so of MS symptoms, and then never had that problem again. But everyone is different. To this day I find it difficult to tilt my head back or to look up at anything high up. That was often a movement that brought on Lhermitte's sign though it came on at other times too.

Apparently the hospital near me has a ms specialist, but she only works %35 of the time. Healthcare where I live is terrible. I'll talk to my friend who has ms, she deals with the ms society a lot here. Thanks for the tip 😀