Potential New Symptoms

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littlestbabie
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Potential New Symptoms

Post by littlestbabie » Thu Sep 01, 2016 1:26 pm

I've been having a helluva time lately. I've been on Tecfidera for months now - probably about four, and it's only recently that I've been experiencing some sudden and sometimes rather severe instances of what is I'm sure either a side effect from the medication, or a symptom of my MS becoming more active again. (I was diagnosed Jan 6 2016 after three years of sudden long-term numbness in arms, legs, and trunk). About a month ago at the end of July while on the way to my birthday dinner, I got sick in the car. Not like carsick, but I started to experience something that has been happening regularly since then. My eyes start to spasm or jump around, almost like they can't be focused. While this is going on I also get a very uncomfortable feeling in the muscles of my left shoulder. I don't really know how to describe it other than uncomfortable... It's almost like pressure, but it is very irritating - it makes me want to tug my arm off just to get it to stop buzzing with that uncomfortable feeling. At the beginning of this adventure I would become very nauseous as well, but since then I've started closing my eyes when I feel my eyes beginning to tighten, and this seems to stave off the worst of these odd 'flare ups.' If I don't close my eyes I get nauseous and dizzy. I also get very... stupid. It's hard to concentrate on anything but the odd feelings and sensations that are simultaneously going on in my body, and so I can't really pay attention to anything or function as I normally would. Driving is dangerous when this is happening and it's highly irritating when my fall semester just started in college. The conflicting physical feelings make all other forms of stimulation (sight, auditory) very annoying, as well. What the heck does this sound like?? Can anyone help me out? Yesterday I had THREE of these 'episodes!' The most I have ever had in one day. I was laid up in bed, clutching my eyes closed and trying to drown out all the different feelings in my eyes/limbs/shoulder. Today I started having one on the tail end of driving to school!! Luckily I got there before it really kicked in, and I was able to lie down in the health center until my class started. This is seriously starting to disrupt my life, including my ability to care for my three year old daughter. How am I supposed to get a degree or be an effective parent when I have spent a startling number of hours from the last month hiding in my dark bedroom with my eyes closed, physically overwhelmed??

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lyndacarol
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Re: Potential New Symptoms

Post by lyndacarol » Thu Sep 01, 2016 2:22 pm

littlestbabie wrote: It's hard to concentrate on anything but the odd feelings and sensations that are simultaneously going on in my body, and so I can't really pay attention to anything or function as I normally would. Driving is dangerous when this is happening and it's highly irritating when my fall semester just started in college. The conflicting physical feelings make all other forms of stimulation (sight, auditory) very annoying, as well. What the heck does this sound like?? Can anyone help me out? Yesterday I had THREE of these 'episodes!' The most I have ever had in one day. I was laid up in bed, clutching my eyes closed and trying to drown out all the different feelings in my eyes/limbs/shoulder. Today I started having one on the tail end of driving to school!! Luckily I got there before it really kicked in, and I was able to lie down in the health center until my class started. This is seriously starting to disrupt my life, including my ability to care for my three year old daughter. How am I supposed to get a degree or be an effective parent when I have spent a startling number of hours from the last month hiding in my dark bedroom with my eyes closed, physically overwhelmed??
You told us you had had a vitamin D deficiency in the summer of 2015. Have you had a vitamin D test in the last year? Since you live in upstate New York, you should request annual testing from your GP. (It would also be a good idea for your 3-year-old to have a vitamin D test since a deficiency could affect her development and, ultimately, her lifelong health situation.)

As a college student, you may be able to request a vitamin D test (the "25-hydroxy D" test) at the health center at no cost to you. AND please request your own copy of the test results.

littlestbabie
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Re: Potential New Symptoms

Post by littlestbabie » Thu Sep 01, 2016 4:06 pm

I had my tests re-done after finishing the course of large-dose Vitamin D that summer and at that point my levels are become normal. And ever since then I've been taking a minimum of 10 IU of Vitamin D per day, so I find it highly unlikely that I'm Vitamin D deficient again. However, I got into the Syracuse SUNY Upstate hospital's MS specialty medical clinic, and my appointment is at 9:30 tomorrow morning. (It was either that or 4 months from now, ai yi yi). I'll bring up the idea of a vitamin deficiency to my new neuro tomorrow!

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lyndacarol
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Re: Potential New Symptoms

Post by lyndacarol » Fri Sep 02, 2016 7:15 am

littlestbabie wrote:I had my tests re-done after finishing the course of large-dose Vitamin D that summer and at that point my levels are become normal. And ever since then I've been taking a minimum of 10 IU of Vitamin D per day, so I find it highly unlikely that I'm Vitamin D deficient again. However, I got into the Syracuse SUNY Upstate hospital's MS specialty medical clinic, and my appointment is at 9:30 tomorrow morning. (It was either that or 4 months from now, ai yi yi). I'll bring up the idea of a vitamin deficiency to my new neuro tomorrow!
It may be unlikely; but since you were deficient just a year ago, it is a good idea to check your Vit D status annually.

There is the wide variability in response to consider: it is not the dosage of vitamin D someone takes that matters, it is the amount of vitamin D (in the storage form) in the blood. In some individuals, 10,000 IU/daily of vitamin D will boost or maintain a good level in the blood – in others, a higher dosage is required to maintain a good level.

The test, a simple blood test that doesn't even require fasting beforehand, is not expensive ($60-$70 usually). I would expect your new neuro tomorrow to accommodate your request. I just think it's a good idea to monitor vitamin D levels, since deficiencies are very common and can lead to any of several different problems.

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Re: Potential New Symptoms

Post by littlestbabie » Fri Sep 02, 2016 12:00 pm

My new neuro is the best! I’m so pleased with the results of my appointment today, although there is no relief from these sudden flare ups of symptomatic disease activity. I didn’t even have to bring up vitamin D - the neuro beat me to it. A whole page of blood tests were ordered for me today; they took sooo much blood, like 4 or 5 tubes (ew), but I’m excited to begin seeing all the results in the next few days/weeks. I’m also going to be getting a couple new MRIs, since my first set of MRIs that helped with my diagnosis were almost a year ago. Based on the results of all these tests I may be switching to a different medication (besides Tecfidera). I’m interested to know if anyone else has ever had MS behavior like this? I’m kind of at a loss for how to manage around these sudden episodes. They’re usually relatively debilitating and they’re becoming harder to function during. I’ve had two already today :\

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lyndacarol
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Re: Potential New Symptoms

Post by lyndacarol » Fri Sep 02, 2016 12:20 pm

littlestbabie wrote:My new neuro is the best! I’m so pleased with the results of my appointment today, although there is no relief from these sudden flare ups of symptomatic disease activity. I didn’t even have to bring up vitamin D - the neuro beat me to it. A whole page of blood tests were ordered for me today; they took sooo much blood, like 4 or 5 tubes (ew), but I’m excited to begin seeing all the results in the next few days/weeks.
What good news! It sounds like you found a good neuro!

littlestbabie
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Re: Potential New Symptoms

Post by littlestbabie » Tue Sep 06, 2016 1:29 pm

I've received a bunch of my test results, including my VITAMIN B12, VITAMIN D 25 HYDROXY, TSH, HEPATIC FUNCTION PANEL & CBC WITH DIFFERENTIAL tests. (Yes I just copy & pasted all those names from my online chart). I don't personally see anything out of the ordinary. My vitamin B12 level is low, but my vitamin D is very healthy and has increased exponentially since it was last checked in January. Officially my vit D was up from 25 to 78, my B12 was down from 642 to 563. If anyone would like to see more of the test results, lmk! i havent have any symptoms at all today, and i also had a symptom-free day this past saturday when my family and I went to the NYS fair. The rest of the time I had between 1 and 3 'episodes' daily.

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lyndacarol
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Re: Potential New Symptoms

Post by lyndacarol » Tue Sep 06, 2016 4:22 pm

littlestbabie wrote:I've received a bunch of my test results, including my VITAMIN B12, VITAMIN D 25 HYDROXY, TSH, HEPATIC FUNCTION PANEL & CBC WITH DIFFERENTIAL tests. (Yes I just copy & pasted all those names from my online chart). I don't personally see anything out of the ordinary. My vitamin B12 level is low, but my vitamin D is very healthy and has increased exponentially since it was last checked in January. Officially my vit D was up from 25 to 78, my B12 was down from 642 to 563. If anyone would like to see more of the test results, lmk! i havent have any symptoms at all today, and i also had a symptom-free day this past saturday when my family and I went to the NYS fair. The rest of the time I had between 1 and 3 'episodes' daily.
Congratulations! It appears that your daily 10,000 IU vitamin D has done the job! Nevertheless, because of your past history of vitamin D deficiency it would probably be a good idea for your GP to test your vitamin D once a year every year.

Your initial test result 25 ng/mL was indeed low; your current test result of 78 ng/mL is a vast improvement! The ranges for vitamin D in most US labs use 100 as the top (there are neurologists who recommend 80-100 ng/mL for patients with neurological symptoms); there is no danger in going even higher. (There have been NO cases of vitamin D toxicity even up to 200 ng/mL.)

I hope you enjoyed your symptom-free Saturday at the state fair – may you enjoy MANY more symptom-free days!

littlestbabie
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Re: Potential New Symptoms

Post by littlestbabie » Thu Sep 08, 2016 12:37 pm

Thank you Lyndacarol!! I appreciate all of your input throughout this thread. I’m planning on keeping up with my 10,000 IU/day vitamin D dosage, since it seems to have done me a lot of good and has lead to a steady increase in my vit D levels :) I’m very much hoping that the rest of my results come back with equally favorable numbers, so that hopefully this issue can begin to be solved without a lot of difficulty.

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