Hi I'm Ali. I'm waiting to relapse!

[Alilou]

Hi everyone!
I recently had optic neuritis (confirmed on MRI), was treated with steroids, recovered now.
I had the full work up with some puzzling results. In a nut shell:
No other lesions
Oligoclonal bands in CSF none in blood
VEP test normal

So, my MS specialist said I don't fit the criteria for diagnosis. UNLESS I have another 'relapse'.
Can anyone share their experience/relate? I don't really know what to expect if I'm going to have another 'relapse'. ON again? Or will I have some crazy-obvious symptom that will land me in hospital?

I'm so confused. So are my family, and my employer, my friends...

Yep, I'm heading to my GP soon to discuss if I need a second opinion - but would love to hear from the community!

FYI - I'm being 'treated' with high dose vitamin D, which my Dr says will help prevent a 'relapse'.

Thanks to all in advance!

[ElliotB]

Welcome!

The best scenario is that you never have another relapse. There are many things you can do to help make this a reality through diet, exercise, supplements and lifestyle change. There is a lot of helpful information on this site.

"I don't really know what to expect"

If it is MS, there is no set pattern as each case is different. Again, the best thing you can do is to take really, really good care of yourself and avoid relapse.

Good luck and be well!

[lyndacarol]

I recently had optic neuritis (confirmed on MRI), was treated with steroids, recovered now.
I had the full work up with some puzzling results. In a nut shell:
No other lesions
Oligoclonal bands in CSF none in blood
VEP test normal

So, my MS specialist said I don't fit the criteria for diagnosis. UNLESS I have another 'relapse'.
Can anyone share their experience/relate? I don't really know what to expect if I'm going to have another 'relapse'. ON again? Or will I have some crazy-obvious symptom that will land me in hospital?

I'm so confused. So are my family, and my employer, my friends...

Yep, I'm heading to my GP soon to discuss if I need a second opinion - but would love to hear from the community!

FYI - I'm being 'treated' with high dose vitamin D, which my Dr says will help prevent a 'relapse'.

Welcome to ThisIsMS, Ali (Alilou). I assume you are newly diagnosed.

ElliotB is correct: every case of MS is unique. There is no way to predict the course yours will take.

You may find the following article interesting:

http://www.medpagetoday.com/resource-ce ... -d/a/45540

MedPageToday
Vitamin D and Oligodendrocytes in MS

The relationship between vitamin D and multiple sclerosis (MS) has been investigated for at least 50 years. It has been implicated epidemiologically in the latitudinal gradient that associates decreased exposure to sunlight in higher latitudes with a higher incidence of MS.

Nicholas LaRocca, PhD, Vice President, Health Care Delivery and Policy Research at the National Multiple Sclerosis Society, agrees with this theory. "There's a good deal of evidence that specific factors related to latitude, such as exposure to ultraviolet light, have been shown to be related to risk of MS," he says.

In recent studies, low vitamin D levels have been noted as a consistent feature in patients newly diagnosed with MS. In addition, the risk for relapse is reportedly higher in patients with established MS and low vitamin D levels.

I am curious… What was the actual number result of your vitamin D test that led your doctor to prescribe high doses of vitamin D? By the way, what does your doctor consider to be a "high dose?" I doubt that it is anything near the amount being prescribed by the Brazilian neurologist, Dr. Cicero Galli Coimbra! (See the Coimbra High-Dose Vitamin D Protocol sub forum here at ThisIsMS: http://www.thisisms.com/forum/coimbra-h ... tocol-f57/)

[Alilou]

Hello, thanks for your replies!
I'm not diagnosed with MS as I haven't had two relapses. This is the part which unsettles me.

Lyndacarol - VitD levels weren't extremely low, but my Dr would like them to be higher than what someone would be able to achieve with out supplements. Taking 5000IU. Doesn't seem like much, but the usual dose is 1000IU. Indeed, my mum has rheumatoid arthritis and takes 50,000IU (and she lives in Missouri). The reason he chose to give me VitD is that, here is Aus, the government does not allow treatment for people who don't meet the full criteria - but Vit D has been proven to have some impact on relapse to keep it at bay anyway. He also said it has little side effects and VitD for MS is all that they had to give MS patients 10 years ago.

[NHE]

So, my MS specialist said I don't fit the criteria for diagnosis. UNLESS I have another 'relapse'.
Can anyone share their experience/relate? I don't really know what to expect if I'm going to have another 'relapse'. ON again? Or will I have some crazy-obvious symptom that will land me in hospital?

I'm so confused. So are my family, and my employer, my friends...

Welcome to ThisIsMS Alilou,
It sounds like you have been diagnosed with Clinically Isolated Syndrome (CIS). This is an attack that looks like MS, but does not fall into the diagnostic criteria for MS.

Here is some background information on the McDonald Criteria for diagnosing MS.
http://www.mult-sclerosis.org/DiagnosticCriteria.html

Here is an updated version from the NMSS.
http://www.nationalmssociety.org/For-Pr ... g-Criteria

In addition to the Vitamin D3, you may wish to look into taking omega-3 oils such as DHA and EPA from fish oil. Aim for 1-2 g/day of combined DHA and EPA. Note that you'll need to look at the supplement labels carefully as some fish oil capsules may only contain about 30% DHA and EPA even though that might state that they're 1000 mg capsules on the front of the bottle.

It's also good to test your vitamin B12 levels as B12 deficiency can cause a plethora of neurological symptoms and mimic MS in many ways. Do you know if your doctor tested your B12?