How do your flares end?

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Makemusique
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How do your flares end?

Post by Makemusique » Thu Feb 28, 2019 4:50 am

Good morning! I am curious about your experiences with relapses or flare ups. I am in the middle of a possible diagnosis and I am curious about your experiences compared to mine. Do you ever experience relapse symptoms that resolve SUDDENLY, or do they fade over hours, days or weeks?

Snoopy
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Re: How do your flares end?

Post by Snoopy » Thu Feb 28, 2019 6:22 am

An exacerbation (relapse, attack, flare-up) is a worsening of old symptoms and/or new symptoms lasting continuously for more that 48 hours. Exacerbations can last days to weeks and depending on the exacerbation recovery can take months. Each person experiences this differently depending on the damage done to the Central Nervous System(CNS). Exacerbations can leave residual symptoms and disabilities.

Makemusique
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Re: How do your flares end?

Post by Makemusique » Thu Feb 28, 2019 1:25 pm

So, I am trying to work out how to talk to my doctor about my symptoms. Some more info... Last year I had a span of 3 months of dizziness that would come in waves. I went to my PCP and she blew me off (did bloodwork that came back normal, but she did not check my B12). I asked for a neurologist referral, went to him 2 months later and he also blew me off. In desperation I went to a chiropractor, he adjusted my neck and my dizziness STOPPED immediately. There was no gradual tapering. Now, a year later I am having parasthesia in my hands and some in my torso. Went to my PCP, she ordered an MRI which indicated some brain lesions. She also checked my blood which showed a pretty low B12.... I have a neurology appointment in 2 weeks. I am curious about other's symptoms as compared to my dizziness experience. I am wondering if I really DID have an issue that the chiropractor fixed and this parathesia is an isolated incident due to the B12.... Thank you for sharing your experiences with me! I want to be as informed and clear as possible for my appointment.

Amber

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Scott1
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Re: How do your flares end?

Post by Scott1 » Thu Feb 28, 2019 4:01 pm

Hi,

We have to be careful not to confuse apples with pears. You may not have MS as not all lesions are caused by it. The B12 issues may be a separate thing. The problems your chiropractor fixed may have been due to a subluxation caused by a misalignment of your head and/or neck. It may have absolutely nothing to do with the lesions and the lesions themselves may not mean anything.
To get a diagnosis of MS, there will be a range of symptoms that a neurologist will look for and you may need more detailed MRI's of both the brain and spine to be sure. I wouldn't be panicking yet.

Regards,

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jimmylegs
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Re: How do your flares end?

Post by jimmylegs » Thu Feb 28, 2019 5:02 pm

hi there :)

just chiming in here to say that i wish i had paid a lot more attention to nutrition right at the beginning, and had not been so consumed with b12 alone as the root of all evil. there was absolutely more to it that that for me, as i would find out later.

early on, b12 did reverse my neurological issues. then it stopped working. and then the s*** hit the fan. around that time i ran a clean unsupplemented serum b12 test out of curiosity. it came back undetectable (test was sensitive down to 75 pmol/l so all i know is, it was less than that).

so yes, low/deficient b12 was definitely a part of my early situation, but was by no means the only issue going on in the wider nutritional picture. my short term recovery after that was via huge therapeutic doses of a wide array of nutrients, way above what i need for health maintenance now.

as for non-nutritional stuff - i can relate to having health issues that required physiotherapy to correct. eg chronic pain in my neck that was so normalized to me, i can't even believe i have now arrived at the point of taking a pain free life for granted. before my neck was fixed i recall my diagnosing neuro commenting that i had 'a ratty neck for someone my age'. i wonder if it would look better to him these days, now that the work has been done??? who knows.

anyway please take extra good care of yourself while working through your inquiries :D
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!

Makemusique
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Re: How do your flares end?

Post by Makemusique » Sun Mar 03, 2019 12:21 pm

Thanks for the input. I did go back to my chiropractor and he said he is 99% sure that my dizziness issues were from the subluxation in my cervical spine. I am positive that my dizzy waves ended as soon as he adjusted my neck and have not returned. It will be interesting to see what the neuro says. I have lesions showing up "mostly in my periventricular areas" with T2/Flair from my MRI on the 11th of February. I have been taking 5,000 mcg of methyl B12 twice per day (switched to the methyl a week ago.) My torso numbness seems to have improved a bit but my hands are awful and numb still.
Jimmylegs, besides the B12, do you have MS? I have read that people with MS CAN have low B12 due to your body needing extra to repair the myelin.... My low B12 result was surprising since I eat a pretty high protein diet ( I count macros and eat about 120-130 grams of protein a day!!)

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jimmylegs
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Re: How do your flares end?

Post by jimmylegs » Sun Mar 03, 2019 4:00 pm

yep i hit all the right inflammatory checkboxes for msdx in spite of being convinced early on it was just b12 deficiency.

the nutritional protocol that did me the most good (for reviving the hands in particular) after b12 stopped reversing problems, involved high protein diet with tons of b-complex vitamins, tons of vit E, multivit and multimineral, and more. of all the diet/supplementation options out there, it made the most sense as an about-face of my previous status quo.

at the time that protocol was written (close to 50 yrs ago), the more recent research on vitamin d3 was still in the future. when i found out my d3 levels were low i set about megadosing to correct, and then switched to a 4000 iu/d maintenance dose. took me a while to figure out i was doing it wrong.

later found i had issues with low normal uric acid (spot on the ms average), which in my case turned out to resolve after identifying and correcting deficient zinc.

later still, secondary to that supplemental vit d3 i had been doing wrong, i ended up with serious issues resulting from low magnesium.

after that, fine tuning the right magnesium regimen for me was its own separate adventure.

it's been a long and complicated learning curve, 13 yrs and counting. :)

glad you are feeling better since the physical work was done. hopefully you can find some personally common-sense corrective moves to help you out of the current xp with the hands. i still remember when i lost ring and pinky fingers on both sides. i held my breath for a few days hoping it would stop, thinking i could manage ok with normal feeling in the others. then they went too, and that was that. permagloves lol - so be it! at least my hands don't feel like useless slabs at the end of my arms any more :S
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!

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