So many symptoms - is this MS?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
Post Reply
kutaubud
Newbie
Posts: 4
Joined: Sun May 26, 2019 3:48 am

So many symptoms - is this MS?

Post by kutaubud » Sun May 26, 2019 9:59 am

Hello everyone ! First of all, excuse my english. I am 20M with no neurological disease in family history (except fibromlygia for my grandpa, does it count as neuro disease ?) and currently shaken with MS fears. I have seen 2 neuros who told me they were sure at 99% I didn’t have MS, but I have read enough about this disease to know you need MRI’s to confirm it or rule out. My MRI’s are scheduled in the end of July. Until then, the uncertainty and the waiting are killing me. I can’t focus on anything else, thinking about it absolutely every second. I spend my days on forums reading about HA, MS, even ALS.

Here’s a list of my symptoms to make it easier for reading, according to chronological order.

February 2019 : Consistent pain in the chest ( heart/upper left lung area). I wasn’t very painful but left me anxious as it was localized in a critical area. Waited a few days and went to the ER. They checked both heart and lung and sent me home with painkiller. The pain disappeared after 2-3 days. Didn’t have a clue back then but could it be the MS Hug? I reckon the hug is often way more unbearable and doesn’t last that long (roughly 5 days in my case)

March : Pain behind right eye. No vision alteration but the pain was very annoying, and was multiplied when I closed my eyes, leaving me sleepless for hours. Went to the GP and he told me it probably was ocular fatigue as I was spending a lot of time behind the computer for school work. The pain slowed down and left within a week. It was at that time I read about Optic Neuritis ( once again, doesn’t really fit my symptoms) and developed some anxiety about MS.

March : The day after the eye thing stopped, I woke up with (perceived ?) weakness/fatigue on both my legs ( especially tights/quadriceps) and a few hours after that had an episode of bladder issue ( went to the bathroom to pee about 7-8 times in an 1H30). Those 2 new symptoms of course increased my anxiety. I was lucky and had a neuro appointment 2 days after. We did VEP test ( optic nerves were normal) and she checked reflexes on legs/feet , and told me it wasn’t MS at 99% according to my symptoms, but still adviced to run MRI’s on spine and brain to be sure. ( got those coming up in August, yup, a lot of waiting list in Belgium ).

April : After that appointment well I was relieved for about a week, and felt like the fatigue on my legs was decreasing. Around that time, I developed another symptom. I was sitting in front of the computer and felt something like a pinch on my right spacula. Immediately after, the area roughly between right elbow and hind arm was going numb and lightly tingling for 30 sec, then stopping, then again for 30 sec... It eventually passed in 5-6 days.

April : Got a cold, and the fatigue in my legs came back. They felt heavy, but I could still walk or climb stairs. Then I started having pain on my right thumb. I thought it was because I was spending so much time on the phone. Then the pain extended to all fingers, on both hands. They were (still are) aching, especially when I have my palm open and fingers stretch. this made me have (irrational according to my age, I admit) ALS fears. Then I developed slight tremor on both hands ( when I open my palm or hold my phone).

May : Went to another neuro with that whole new hand stuff. He didn’t seem very concerned by those, and he made me an EMG test on both legs ( it was very fast, like 5-10 min, normal ?), checked reflexes again ( no Babinski or overreacting reflexes) , made me walk on toe and heels, the classic stuff. He looked 20 seconds at the EMG results and told me they were “pretty reassuring”. He also said, just like the other neuro, it wasn’t MS at 99% , because with all those symptoms it would mean I had a lot of lesions, which didn't seem likely to him.


Now since about 20 days, I have a whole lot of new symptoms going on. I have a sort of internal vibration on my lower body when I'm about to fall asleep. I have minor twitching on my hands, arms, legs. Twitching in my right eyelid. When I'm laying down , I feel some kind of pulsation on my spine, upper back. WHAT IS ALL THIS ? MS ? PPMS ? BFS ? Fibro ? I'm freaking out so much.

Thank you for reading and for any opinions , sorry for the long post and the english mistakes.

PS : I had a bloodwork , my GP said everything was normal.

User avatar
NHE
Volunteer Moderator
Posts: 5315
Joined: Sat Nov 20, 2004 3:00 pm
Contact:

Re: So many symptoms - is this MS?

Post by NHE » Sun May 26, 2019 10:36 am

kutaubud wrote:
Sun May 26, 2019 9:59 am
PS : I had a bloodwork , my GP said everything was normal.
"Normal" is a setting on as washing machine. What "normal" often means with respect to blood test results is that you're within +/- 2 standard deviations from the mean, also known as the 95% confidence interval. This means that you could be low in some test result, but the lab will still report you as being "normal."

Do you any actual test result data? For example, vitamin B12 or D3? A deficiency in vitamin B12 can cause a variety of neurological symptoms.

Also, are you taking any supplements? Sometimes over doing a supplements can cause problems. For example green tea can inhibit folate and too much vitamin B6 can cause a loss of proprioception.

kutaubud
Newbie
Posts: 4
Joined: Sun May 26, 2019 3:48 am

Re: So many symptoms - is this MS?

Post by kutaubud » Sun May 26, 2019 10:53 am

Hello, thank you for your answer. I will get my detailed results tomorrow and will come back with them.

I was tested last year , and had vitamin D deficiency ( around 15 I think). I’m taking supplements for that since.

User avatar
jimmylegs
Volunteer Moderator
Posts: 12076
Joined: Sat Mar 11, 2006 3:00 pm

Re: So many symptoms - is this MS?

Post by jimmylegs » Sun May 26, 2019 12:17 pm

hi and welcome :) can you clarify how much vitamin d daily, which supplemental form (eg D2 or D3?) and whether you are taking it in combination with any other essential nutrient co-factors?
  • Magnesium Supplementation in Vitamin D Deficiency (2019)
    https://www.ncbi.nlm.nih.gov/pubmed/28471760
    "Mg is essential in the metabolism of vitamin D, and taking large doses of vitamin D can induce severe depletion of Mg. Adequate magnesium supplementation should be considered as an important aspect of vitamin D therapy."
i'm so glad it's finally easy to find references like the above :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

kutaubud
Newbie
Posts: 4
Joined: Sun May 26, 2019 3:48 am

Re: So many symptoms - is this MS?

Post by kutaubud » Wed May 29, 2019 8:13 am

Hello,

So I was taking 25.000 UI ampoule every 3 weeks/a month. I didn't took any other supplements. Looks like it didn't work because my 25 OH vitamin D level came back as 16,6. Last year in May it was 15. So that is quite dramatic. What does it tell us ? I know vitamin D deficiency is a major risk factor in Multiple Sclerosis. Is there more to that?

Some other results are :

B12 : 691
Iron : 126
Creatinine : 0.78
Urea : 24
Glucose : 85
TSH : 3.880


Thank you for your link about Magnesium and Vitamin D relation. I will start taking Magnesium supplements.

User avatar
jimmylegs
Volunteer Moderator
Posts: 12076
Joined: Sat Mar 11, 2006 3:00 pm

Re: So many symptoms - is this MS?

Post by jimmylegs » Wed May 29, 2019 10:10 am

ok re those results it's more informative to include units of measurement but either way, 691 looks reasonable at least.

d3 at 15 or 16.6 is a problem regardless of units. those results are not good if in ng/ml and worse if in nmol/l.

whether your vitamin d is 25000 iu in d2 or 25000 iu in d3 makes a difference. d3 is more bioavailable.
taking vit d once every three weeks is likely not going to do the trick regardless of the form taken.

magnesium is known to boost d3 all by itself. you can experiment adding magnesium without changing the d3 routine first, then check the impact on d3. if the level goes high enough to protect against things like ms, great. (that would be levels at least around 100 nmol/l to start, with up to 125-150 nmol/l being about as high as you want to go before you could start seeing potential negative consequences).

when you add magnesium to the regimen, it's important to consider chemical form, daily dose, and timing in relation to the d3.
chemical forms:
mag oxide is a great laxative. less well absorbed.
mag citrate is somewhat better absorbed but still laxative in high enough amounts
mag glycinate is mag oxide complexed with glycine. even better absorbed into tissue and you really have to go overboard to inflict a laxative effect with that one.
daily dose:
recommended intakes are under review and may be increased.
common intakes are below even existing recommendations.
the intake recommendations apply to average size people, so considering the bell curve, are likely too low for half of the population.
some authors recommend much higher daily intakes to account for stressors associated with modern lifestyles.
the higher magnesium intake recommendations align to 7-10mg/kg body weight per day from combined food and supplemental forms.
timing:
d3 monopolizes any magnesium in your system. any time you take d3, some magnesium should go in at the same time to work with the d3. it's also important to get plenty of magnesium in between d3 doses, to take care of mag's other several hundred jobs in the body.

the other option is to add magnesium and change the vitamin d regimen concurrently.
50,000 IU vit d3 per day for 10 days is a standard short term therapeutic regimen. that regimen over that short time frame is meant to increase serum amount by 50 nmol/l. the regimen works less well for overweight ppl (more like a 40 nmol/l increase) and even less well for obese individuals (~30 nmol/l increase). efficacy can be expected to vary with magnesium status as well, obviously.
last time i needed a quick d3 boost, i used this regimen (with a multi and extra mag of course).
my level went up by 40, but i was only left with 90 nmol/l and i wanted it higher.
i did the same regimen again, 50K IU d3 per day for another 10 days, but the second time my level went up by 76 IU.
between the first and second rounds, i definitely had had more time for the various beneficial cofactors to accumulate in my system, so maybe they helped the d3 absorb better in round two.
either way once the second 10 day therapeutic boost was over i went back to a more routine maintenance regimen of vit d3 and other essentials.

i hope the extra detail is useful in your case.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

kutaubud
Newbie
Posts: 4
Joined: Sun May 26, 2019 3:48 am

Re: So many symptoms - is this MS?

Post by kutaubud » Wed May 29, 2019 10:41 am

Thank you once again for your answer.

Sorry for forgetting about the unit. B12 was ng/l and vit d in ng/ml. And the vit I was taking was d3.

According to what you said, I think I will increase the vitamin d3 routine at one intake every 10 days ( also adviced by GP) and take magnesium supplements on the side.

I have nothing to lose while waiting for the MRI, so I will try that.

My guess according to the manifestation of my symptoms and a whole lot of stories I've read about MS is that I have either PPMS or some kind of BFS mixed up with anxiety. I guess the VEP test and clinical exam being normal, the second option seems closer. But this waiting game is hard.

Anyway, in both case this vit d/magnesium combo will be profitable for my health.

I will let you know how it goes if you are interested.

User avatar
jimmylegs
Volunteer Moderator
Posts: 12076
Joined: Sat Mar 11, 2006 3:00 pm

Re: So many symptoms - is this MS?

Post by jimmylegs » Wed May 29, 2019 2:03 pm

ok so for b12, ng/l is the same as pg/ml and 691 definitely looks okay.

re d3 status: 15 and 16.6 ng/ml of serum 25(OH)vit d3 converts to 37 and 41 nmol/l. you could safely aim to triple those numbers, as long as the d3 intake is balanced with other essentials.

for context, when i started my two rounds of 50,000iu vit d3 daily for 10 days (totalling 500,000 IU each time), my starting vit d3 status was already higher than yours now- ie, mine was 50 nmol/l or 20 ng/ml.
by the time i finished my first 500,000IU over a 10 day period, my serum d3 level was up to 36 ng/ml
by the end of the second 500,000 IU over 10 days, my level was up to 66 ng/ml
that's when i went back to a more normal maintenance routine. the high-dose part was all done in a few weeks.

your plan to take 25,000 every 10 days, means you will achieve your first input of an extra 500,000IU vit d3 between six and seven months from today. i personally don't have that kind of patience, but to each their own! :)
so if that is indeed your plan and if you then get serum d3 status retested towards the end of 2019, i will definitely be interested to hear whether or not you have achieved a 50 nmol/l (20 ng/ml) serum increase. i suspect not, because you'll be drawing on relatively low stores in between doses.

if your plan does have good effect, and you have reached ~35 ng/ml serum vit d3 by the end of 2019, then maybe you can continue your regimen into the first several months of 2020 and see if you can get your serum d3 levels as high as 45 ng/ml.

i agree that regardless of the results of your diagnostic investigations, that topping up your d3 and magnesium (and essential nutrients in general) can be expected to benefit your health overall. balance and moderation are key!

i'll look forward to your next update. hopefully it's good news!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Post Reply
  • Similar Topics
    Replies
    Views
    Last post