Hi! New from Canada

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Hi! New from Canada

Postby yycmamma » Sun Nov 20, 2016 9:20 pm

Hey everyone!

I'm really looking forward to reading other people's stories, and get and hopefully give some support here. This is all fairly new to me (although I've had some symptoms for apparently a few years and have been passing them off as stress!) Ooops.

This past July, I woke up one morning and had severe pain in my left eye. I didn't do anything for it, and hoped that nature would take it's course. Everyday for about 2 weeks, I had a constant headache, and pain in and around my eye. Then, I woke up and noticed my sight was pretty bad. That was a pretty severe sign for me, so I went to Emergency. They passed it off as a sinus infection, even I knew it wasn't that. I wasn't sick at all. I waited another day, and made an appointment with my eye doctor. She came to the conclusion that it was Optic Neuritis. She said if it were to get any worse, to call her back, and she would get me into the eye clinic. Once that did happen, they confirmed that it was indeed O.N, I then made an appt with my doctor.

When I went to see my doctor, see seemed concerned about my numbness and tingling that I've been having (I honestly didn't think anything of it). She said she wanted to set me up for an MRI, so she did. Surprisingly, I was in within 3 weeks of the referral. They had found several lesions on my brain, and it was suggested MS on the report.

After I got in to see an Opthalmologist (who used to be the head of the MS society), she booked me for another MRI, but this time for my spine. She said she thinks that I may have had MS for quite a few years. I go for that MRI in Jan.

Things seemed to have settled down for about a month and a half, but guess what came back? My Optic Neuritis!!! This time, it's in my RIGHT eye. It began November 2nd. I bet my hubby $5 that I would lose my vision within 2 weeks, and low and behold, it went!

Saw my eye doctor again, confirmed it was Optic Neuritis. His wife has MS, and he said she even told him that if I needed someone to talk to, to let him know and we could go for coffee. How sweet is that?! He also said it's a good thing (not good, but you know what I mean) that I'm having another round of symptoms. It will be good to have on my record when they go in for a type of diagnosis.

I'm off work now..... until December 10th, and having pretty annoying symptoms! The worst for me is the EXTREME FATIGUE!! I can sleep for 12 hours and still be exhausted during the day. My hands and legs take turns being numb and/or tingly. It feels like my entire body is sitting on a washing machine on it's spin cycle. I have a crappy headache because of my eye. I can't bend my head/neck forward without having an electrical feeling shoot through my body. I can't multitask anymore, I become very confused very easily, and sometimes I can't find the proper words to get out when I'm half way through a sentence.

I haven't been officially diagnosed, and this is all kind of new and quickly paced for me. Has anyone had symptoms worsen so quickly? Has anyone had their relapses so close together? I've been able to stay pretty positive about this whole situation, but some days I'm pretty depressed (maybe because I'm tired)

Looking forward to learning more about this!

Heather xx
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Re: Hi! New from Canada

Postby jimmylegs » Mon Nov 21, 2016 8:49 am

hi and welcome heather :D what province or territory are you in, iima?
re your question, my symptoms once i realized i no longer had reversible issues came on quickly and although i never had ON, i was diagnosed pretty much inside a week. the pressure was on because i had been planning to go away for a year, in just a few days. ended up putting it off (needed months of stable health to get the right travel insurance) and was only overseas for 5 months in the end. that was 10 yrs ago, still hanging in there. it's the most scary at first, then you gradually get used to the slow pace at which you are able to acquire new information, and you also slowly get used to how unsatisfying-ly vague answers can be!! good crowd here, we've all been there :)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Hi! New from Canada

Postby lyndacarol » Mon Nov 21, 2016 8:52 am

yycmamma wrote:I waited another day, and made an appointment with my eye doctor. She came to the conclusion that it was Optic Neuritis. She said if it were to get any worse, to call her back, and she would get me into the eye clinic. Once that did happen, they confirmed that it was indeed O.N, I then made an appt with my doctor.

When I went to see my doctor, see seemed concerned about my numbness and tingling that I've been having (I honestly didn't think anything of it). She said she wanted to set me up for an MRI, so she did. Surprisingly, I was in within 3 weeks of the referral. They had found several lesions on my brain, and it was suggested MS on the report.

After I got in to see an Opthalmologist (who used to be the head of the MS society), she booked me for another MRI, but this time for my spine. She said she thinks that I may have had MS for quite a few years. I go for that MRI in Jan.

Things seemed to have settled down for about a month and a half, but guess what came back? My Optic Neuritis!!! This time, it's in my RIGHT eye. It began November 2nd. I bet my hubby $5 that I would lose my vision within 2 weeks, and low and behold, it went!

Saw my eye doctor again, confirmed it was Optic Neuritis. His wife has MS, and he said she even told him that if I needed someone to talk to, to let him know and we could go for coffee. How sweet is that?! He also said it's a good thing (not good, but you know what I mean) that I'm having another round of symptoms. It will be good to have on my record when they go in for a type of diagnosis.
Welcome to ThisIsMS, Heather.

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. (2013)
http://www.ncbi.nlm.nih.gov/pubmed/23250818

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.

In view of the paper above, I suggest that you ask one of your doctors (GP, family doctor, ophthalmologist, neurologist – ANY doctor) to order a simple, inexpensive vitamin D blood test called "25-Hydroxy D" for you. Ask for your own copy of the test results so that you have the actual numbers.

As for your test results, GrassrootsHealth (http://www.grassrootshealth.net) recommends that vitamin D3 levels should be at least 40-60 ng/mL (or 100-150 nmol/L, which I believe is the unit of measure used in Canada). Some neurologists and vitamin D experts recommend that blood levels should be 80-100 ng/mL (or 200-250 nmol/L) for patients with neurological symptoms.

By the way, several conditions (not only MS) can cause lesions on the brain. For example, migraines and vitamin B12 deficiency can cause lesions. Have you had blood tests to rule out vitamin B12 deficiency? A serum B12 test alone is often not adequate to detect a deficiency; thorough testing should include a serum homocysteine test, a methylmalonic acid test, and an RBC (red blood cell) folate test.
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