Seeking Perspective.
Posted: Mon May 16, 2016 12:12 pm
Hi everyone! I'm a 30 y/o male, and this has now been going on since either late 2014 or early 2015.
I found this site a couple of months ago. I wanted to post immediately, but instead refrained and read what everyone else has posted. I found it exceptionally helpful, and decided to be patient and follow what leads I could so people don't have to repeat themselves.
I want to especially thank lyndacarol for posting about vitamin deficiencies on every thread. Thank you! Your insistence gave me the motivation and direction to research more into that, which led my doctor to test for basically everything except b12.
She felt that testing for b12 was unnecessary, since she apparently helped someone who wrote a book on it do research and says she's an expert. Also I eat a lot of b12 food (steaks) and take supplements. She doesn't think it's neccessary. I tried to get her to do it anyway, but she gave me this look and that was that.
I've researched enough to think what's happening to me is very unlikely to be MS. My vitamin D level was at 23, and that's likely the culprit. However, even though I'm taking the prescribed supplements and spending hours a day in the sun I've had new symptoms appear. I'm long past the paranoid stage, and now I just want to figure out what the problem is and either fix it or find a better way to cope. But that's proving to be incredibly difficult, a situation I'm clearly not alone in.
The shortish version of symptoms:
-Fatigue, sometimes extreme. The worst of any symptom. Not the go to sleep kind, the kind that keeps you awake. It's just relentless.
-Pain, especially in my upper arms, that feels like someone stuck a spatula between my muscle and bone and is trying to pry the muscle off. It ranges from barely there to being migraine intense. Although, contrary to my metaphor there's no feeling of a spatula, just of the muscle trying to break free.
-Weakness, especially in my hands, lower legs, and knees. It ranges quite a lot from day to day as well, but at it's worst I literally can't open a plastic spice container.
-Eye issues. These change in nature a lot, and they never seem to last long. Mostly it's my left eye. It's been everything from a loss of color to a large rectangular blind spot. Recently I had vertically oriented double vision for about an hour, also in my left eye.
-Tingling in different places. Occasional sensations of shock, usually travelling from my knee or elbow to the extremity, and then a residual stabbing pain or numbness. Usually doesn't last longer than half an hour or so.
-Brain fog and immediate memory issues. Like I'll forget to turn the stove on and stand there like an idiot wondering why it's not cooking.
-Muscle spasms.
-Symptoms come and go. Life will be very difficult for three weeks or so, and then the symptoms will recede, then vanish. I'll have two to six weeks of wondering what I was so worried about and then it'll hit again like a truck. I can sense it coming or going a day or two before it does.
Each relapse seems to develop new symptoms, although it always seems to recede completely each time.
Symptoms I have *not* had.
-Numb whole limbs
-L'hermette's sign
-The "MS hug"
-Balance issues not rooted in weakness/fatigue
I'm taking 2000 iu of vitamin D a day on the advice of my GP, and 1000 mg of b12 on my own initiative. I also take magnesium, zinc, and calcium supplements once or twice a week. This is basically a new thing for me- I've always been naturally healthy and had a very good diet growing up.
Here are the relevant tests and numbers. Other than b12, I've probably been tested for it:
Potassium: 4.3
Calcium: 9.6
Magnesium: 1.8
Vitamin D: 23
Negative for Chlamydia, Ghonorroeae, and HIV
Negative for Lead poisoning
Transglutinase IGA: 4.3
TSH 0.630 (this seems low to me since the reference range is 0.4-4.0, but the doc says it's fine.)
I have a whole stack of other tests as well, in case there's something I've missed. I've decided to finally post here because I'm hoping y'all will have more information than I do and can help lead me to new sources.
Here are my main questions:
1) Does a vitamin deficiency act in a remitting relapsing way? To me that doesn't make logical sense, but I'm betting i'm ignorant of something about the body that would make it do that. I mean, if you're low on vitamin C you get scurvy and it just gets worse until you eat some or die. Have you heard of that happening or had it happen yourself?
2) Is there a word for symptoms that relapse/remit other than "relapse/remit"? I can't find anything else that does this in my googling, and I can't help but wonder if I don't know something.
3) Am I missing anything else? I realize y'all aren't doctors, but does this sound like several things together?
I think I have more, but this is already so crazily long and I should stop here. Thanks again for the help you've already provided!
I found this site a couple of months ago. I wanted to post immediately, but instead refrained and read what everyone else has posted. I found it exceptionally helpful, and decided to be patient and follow what leads I could so people don't have to repeat themselves.
I want to especially thank lyndacarol for posting about vitamin deficiencies on every thread. Thank you! Your insistence gave me the motivation and direction to research more into that, which led my doctor to test for basically everything except b12.
She felt that testing for b12 was unnecessary, since she apparently helped someone who wrote a book on it do research and says she's an expert. Also I eat a lot of b12 food (steaks) and take supplements. She doesn't think it's neccessary. I tried to get her to do it anyway, but she gave me this look and that was that.
I've researched enough to think what's happening to me is very unlikely to be MS. My vitamin D level was at 23, and that's likely the culprit. However, even though I'm taking the prescribed supplements and spending hours a day in the sun I've had new symptoms appear. I'm long past the paranoid stage, and now I just want to figure out what the problem is and either fix it or find a better way to cope. But that's proving to be incredibly difficult, a situation I'm clearly not alone in.
The shortish version of symptoms:
-Fatigue, sometimes extreme. The worst of any symptom. Not the go to sleep kind, the kind that keeps you awake. It's just relentless.
-Pain, especially in my upper arms, that feels like someone stuck a spatula between my muscle and bone and is trying to pry the muscle off. It ranges from barely there to being migraine intense. Although, contrary to my metaphor there's no feeling of a spatula, just of the muscle trying to break free.
-Weakness, especially in my hands, lower legs, and knees. It ranges quite a lot from day to day as well, but at it's worst I literally can't open a plastic spice container.
-Eye issues. These change in nature a lot, and they never seem to last long. Mostly it's my left eye. It's been everything from a loss of color to a large rectangular blind spot. Recently I had vertically oriented double vision for about an hour, also in my left eye.
-Tingling in different places. Occasional sensations of shock, usually travelling from my knee or elbow to the extremity, and then a residual stabbing pain or numbness. Usually doesn't last longer than half an hour or so.
-Brain fog and immediate memory issues. Like I'll forget to turn the stove on and stand there like an idiot wondering why it's not cooking.
-Muscle spasms.
-Symptoms come and go. Life will be very difficult for three weeks or so, and then the symptoms will recede, then vanish. I'll have two to six weeks of wondering what I was so worried about and then it'll hit again like a truck. I can sense it coming or going a day or two before it does.
Each relapse seems to develop new symptoms, although it always seems to recede completely each time.
Symptoms I have *not* had.
-Numb whole limbs
-L'hermette's sign
-The "MS hug"
-Balance issues not rooted in weakness/fatigue
I'm taking 2000 iu of vitamin D a day on the advice of my GP, and 1000 mg of b12 on my own initiative. I also take magnesium, zinc, and calcium supplements once or twice a week. This is basically a new thing for me- I've always been naturally healthy and had a very good diet growing up.
Here are the relevant tests and numbers. Other than b12, I've probably been tested for it:
Potassium: 4.3
Calcium: 9.6
Magnesium: 1.8
Vitamin D: 23
Negative for Chlamydia, Ghonorroeae, and HIV
Negative for Lead poisoning
Transglutinase IGA: 4.3
TSH 0.630 (this seems low to me since the reference range is 0.4-4.0, but the doc says it's fine.)
I have a whole stack of other tests as well, in case there's something I've missed. I've decided to finally post here because I'm hoping y'all will have more information than I do and can help lead me to new sources.
Here are my main questions:
1) Does a vitamin deficiency act in a remitting relapsing way? To me that doesn't make logical sense, but I'm betting i'm ignorant of something about the body that would make it do that. I mean, if you're low on vitamin C you get scurvy and it just gets worse until you eat some or die. Have you heard of that happening or had it happen yourself?
2) Is there a word for symptoms that relapse/remit other than "relapse/remit"? I can't find anything else that does this in my googling, and I can't help but wonder if I don't know something.
3) Am I missing anything else? I realize y'all aren't doctors, but does this sound like several things together?
I think I have more, but this is already so crazily long and I should stop here. Thanks again for the help you've already provided!
