Newly Diagnosed

[MamaMaria]

Hello! I am a twenty-two year old full time mom and a part time worker who is newly diagnosed with RRMS as of yesterday. My MS journey actually began in July of 2013 where I woke up and was seeing double. After going to the eye doctor, they ordered an MRI where lesions on my brain were found and MS was brought up but my eye doctor at the time told me something along the lines of "MS is something so far out there we don't think you should worry about it." After two months my double vision faded away and I put it in the back of my mind and all but forgot about it.

Over two years pass and I continue on with college, get pregnant in 2014 and in May of 2015 my son was born. At about 4 months postpartum in September of 2015, I notice my left eye is sore and swollen. This lasted for 4 days and when the pain faded, I noticed a vertical line of blur in my left eye when I closed my right. I didn't think much of it but when it didn't go away after a few days, I decide to go to a (different) eye doctor and after being there for 3 hours, they diagnosed me with Optic Neuritis. She tells me she's concerned about this due to my history of double vision and orders another MRI to be done. The MRI confirms I have Optic Neuritis and more brain lesions are found. She refers me to an optic neurologist and in November he tells me that all the signs point to MS and refers me to a general neurologist.

In the two months that I'm waiting for my neurologist appointment, my Optic Neuritis clears up to about 95% back to normal and two days after Christmas, the right side of my body is suddenly falling asleep in short intervals throughout the day: something I've never felt before. After almost two weeks, the numb feelings stop. Yesterday I finally got to see the neurologist who diagnoses me with RRMS. After I tell her about the awful fatigue I've had for as long as I can remember, she tells me she suspects I've had it for a while.

So that's my MS story What's next for me is picking out a treatment plan! I'd like to know how and when you were all diagnosed and what treatment plan works for you? My neurologist is recommending that I look into Tecfidera, Aubagio and Rebif. I've spent some time researching them today but am feeling a little overwhelmed with picking a treatment option. It's nice to meet you all and to be apart of this forum!

[lyndacarol]

Hello! I am a twenty-two year old full time mom and a part time worker who is newly diagnosed with RRMS as of yesterday. My MS journey actually began in July of 2013 where I woke up and was seeing double. After going to the eye doctor, they ordered an MRI where lesions on my brain were found and MS was brought up but my eye doctor at the time told me something along the lines of "MS is something so far out there we don't think you should worry about it." After two months my double vision faded away and I put it in the back of my mind and all but forgot about it.

Over two years pass and I continue on with college, get pregnant in 2014 and in May of 2015 my son was born. At about 4 months postpartum in September of 2015, I notice my left eye is sore and swollen. This lasted for 4 days and when the pain faded, I noticed a vertical line of blur in my left eye when I closed my right. I didn't think much of it but when it didn't go away after a few days, I decide to go to a (different) eye doctor and after being there for 3 hours, they diagnosed me with Optic Neuritis. She tells me she's concerned about this due to my history of double vision and orders another MRI to be done. The MRI confirms I have Optic Neuritis and more brain lesions are found. She refers me to an optic neurologist and in November he tells me that all the signs point to MS and refers me to a general neurologist.

In the two months that I'm waiting for my neurologist appointment, my Optic Neuritis clears up to about 95% back to normal and two days after Christmas, the right side of my body is suddenly falling asleep in short intervals throughout the day: something I've never felt before. After almost two weeks, the numb feelings stop. Yesterday I finally got to see the neurologist who diagnoses me with RRMS. After I tell her about the awful fatigue I've had for as long as I can remember, she tells me she suspects I've had it for a while.

So that's my MS story What's next for me is picking out a treatment plan! I'd like to know how and when you were all diagnosed and what treatment plan works for you? My neurologist is recommending that I look into Tecfidera, Aubagio and Rebif. I've spent some time researching them today but am feeling a little overwhelmed with picking a treatment option. It's nice to meet you all and to be apart of this forum!

Welcome to ThisIsMS, MamaMaria.

After using 3 different MS injectables in turn for a total of 10 years without any apparent benefit, I chose to discontinue any approved MS medication. Since the cause of MS is unknown, I believe that no effective treatment can be developed until the cause is found.

If you choose to use any of these medications, I urge you to investigate them thoroughly – there can be serious side effects.

You have not given us the details of your MS journey. In November, your optic neurologist said "that all the signs point to MS" and, in my opinion, this seems premature without conducting a thorough investigation. MS can only be considered after the many other more likely causes for your symptoms have been ruled out.

I hope your GP or neurologist start with nutrient testing. Low levels or deficiencies of certain nutrients could be responsible for your symptoms. One of these is vitamin B12 (Have you had any of these 4 tests, which are needed to thoroughly ruled out B12 deficiency: serum B12 test; RBC folate test; serum homocysteine test; methylmalonic acid test?). Do you know your vitamin D level? (Over 1/2 of the general population is deficient in vitamin D.) Magnesium? Iron (ferritin)? Zinc?

Pregnancy/breast-feeding are especially demanding on the mother's nutrient levels.

It is a good idea to request your own copy of any test results.

Have the functions of your thyroid gland, liver, and kidneys been investigated?

I suggest that you use these two months before your next appointment to prepare a written list of all your symptoms and your questions for the neurologist. You may indeed have MS, but not every one of your symptoms is necessarily caused by MS – other possibilities should be investigated.

[lyndacarol]

I notice my left eye is sore and swollen. This lasted for 4 days and when the pain faded, I noticed a vertical line of blur in my left eye when I closed my right. I didn't think much of it but when it didn't go away after a few days, I decide to go to a (different) eye doctor and after being there for 3 hours, they diagnosed me with Optic Neuritis. She tells me she's concerned about this due to my history of double vision and orders another MRI to be done. The MRI confirms I have Optic Neuritis and more brain lesions are found. She refers me to an optic neurologist and in November he tells me that all the signs point to MS and refers me to a general neurologist.

In the two months that I'm waiting for my neurologist appointment, my Optic Neuritis clears up to about 95% back to normal

From the vitamin D Council website:

A 2012 research study from Iran looked at whether or not taking a vitamin D supplement reduced the likelihood of developing MS in people who were at high risk of developing the condition. The main results were:
Taking a vitamin D supplement reduced the likelihood of developing MS in people at high risk for developing the condition.
Taking a vitamin D supplement significantly reduced the number of brain lesions detected by an MRI scan.
The people taking part in this study were taking much more vitamin D than the US government recommends. They developed significantly fewer new brain lesions than the people not taking vitamin D and were much less likely to develop MS. None of the people taking the vitamin D experienced relapses. Since the number of people in the study was so small, it’s difficult to say definitively if vitamin D plays a role in preventing MS.

Preventive effect of vitamin D3 supplementation on conversion of optic neuritis to clinically definite multiple sclerosis: a double-blind, randomized, placebo-controlled pilot clinical trial.

http://www.ncbi.nlm.nih.gov/pubmed/23250818

Abstract
Multiple sclerosis (MS) presents with optic neuritis (ON) in 20 % of cases and 50 % of ON patients develop MS within 15 years. In this study, we evaluated the preventive effects of vitamin D3 administration on the conversion of ON to MS (primary outcome) and on the MRI lesions (secondary outcome) of ON patients with low serum 25 (OH) D levels. Thirty ON patients (15 in each of 2 groups, aged 20-40 years) with serum 25 (OH) D levels of less than 30 ng/ml were enrolled in a double blind, randomized, parallel-group trial. The treatment group (cases) received 50,000 IU of vitamin D3 weekly for 12 months and the control group (controls) received a placebo weekly for 12 months. Finally, the subsequent relapse rate and changes in MRI plaques were compared between the two groups. Risk reduction was 68.4 % for the primary outcome in the treatment group (relative risk = 0.316, p = 0.007). After 12 months, patients in the treatment group had a significantly lower incidence rate of cortical, juxtacortical, corpus callosal, new T2, new gadolinium-enhancing lesions and black holes. The mean number of total plaques showed a marginally significant decrease in the group receiving vitamin D3 supplementation as compared with the placebo group (p = 0.092). Administration of vitamin D3 supplements to ON patients with low serum vitamin 25 (OH) D levels may delay the onset of a second clinical attack and the subsequent conversion to MS.
PMID: 23250818