Hello there! New to the forum. I'm sure you've had these types of posts a million times but I would be seriously grateful for anyone who takes the time to read mine and respond. I'm feeling hopeless, and a bit of a hypochondriac at the moment.
A (sort of) brief summary--
I've had a couple weird issues with my eyes over the past couple years. 2 different times I had my vision go blurry in one eye (If I remember correctly it was my left eye both times). There was like a blurry line that I could watch go across my field of vision-- made it so I couldn't read or anything out of that eye-- I had double vision while it was there and it just resolved on its own with no other issues. It took about an hour or so to resolve and came on very suddenly in the middle of the day, with no other symptoms. I also have days now where my eyes feel like they are "jiggling"-- not sure how else to describe it, but my perception is that my eyes are slightly jerking around making it hard to focus on things, but I don't see any obvious signs of actual twitching or jerking of the eye itself (I am scheduled to see an eye doctor tomorrow)
My main symptom, however, is debilitating fatigue that has gotten worse over the past couple years. I have crashes in the afternoon and my fatigue is much worse in the week before I start my period. I tried googling that issue to see if maybe it was hormonal and came across a study that said it's common for MS related fatigue to be worse -- you guessed it-- in the afternoons and in the week before periods start due to a natural rise on body temp during those times. Yay. It is not "just" fatigue...it is as if I've suddenly been hit with a tranquilizer dart at times, although I typically have low-mid grade fatigue every single day. I do not have sleep apnea nor do I snore or have any other sleeping issues that I am aware of. I sleep, on average, 8 1/2 hours per night, but it can range from 7-11 hours.
My balance is off, I stumble, I can't hold yoga poses that used to be easy for me. I have ringing in my left ear occasionally. I also have bouts of dizziness that can last briefly or up to several days. I have started to struggle with constipation. (TMI, but I hope it's ok). We bought a Squatty Potty (yes, one of those things that went viral on facebook, lol) and it has helped somewhat.More recently, I had issues walking for a few days. I felt like a marionette with how I was having to exaggerate my movements. And I use crutches around the house from time to time because it just feels better to have something to lean on when I'm having a bad day/week.
I've been getting numbness and tingling mostly down my left arm including my last 2 fingers, but I have had it to a lesser extent in my right arm. This has happened multiple times in the past couple months. I have a burning sensation in the palm of my left hand almost every day recently (past few months)Also, my legs twitch. Not restless leg stuff....but they literally twitch without any control-- like I'm being hit with electricity, and big twitches-- like my entire legs move/fly up or out.
My husband says it happens about a third of the time when he's home (he's a truck driver so only home weekends), sometimes it wakes me up, sometimes it does not. It doesn't happen when I'm falling asleep, it is more likely to happen in the early morning. It's also happened when I'm completely awake in the middle of the day. My left big toe twitches on a much smaller scale. My handwriting and typing have declined over the past couple years, as well. I cannot stand to text as it bother my hands quite a lot. My hearing in my left ear, and the vision in my left eye is weaker than in my right ear and eye. (I'm just realizing there is a pattern with much of my symptoms being on the left side of my body....hmmmm...)
Back in 2009, I started cycling and by 2010, I was cycling and running competitively. I lost 30 pounds, was in fantastic shape, and was racing several times a month, and training almost every day. Now, when I try and run or ride my bike, my hamstrings get really, really tight. They didn't do this before, this is a fairly new symptom (over the past 6 months)....if I am actually able to exercise for any length of time and really get warmed up or hot, I can have issues with being able to walk afterwards until I cool down.
My husband was at one of my races in May or June and had to catch me as I came across the finish line-- I couldn't feel my legs for about the last mile, and it was like there was no communication between my brain and legs. It took about 45 minutes to cool down and for me to be able to walk normally afterwards. It was really, really weird.
I also get these really weird, electrical like feelings in my head. Almost like a halo around it. It isn't painful, it's just a weird sensation. It always happens when I've had what I call a "crash" where I have a very extreme fatigue come on very suddenly (the whole tranquilizer dart thing) and I basically pass out and HAVE to sleep. I do not have a choice, I cannot function. And I am semi-conscious for some of it where I can hear what is going on around me but I cannot communicate, and I feel that weird electrical sensation, then I typically sleep/pass out for a couple hours and when I wake up, I am groggy, my speech is slurred and I sound and feel as if I've been drugged.
It almost seems seizure-like, but without any spasms or twitching.I haven't really noticed any urinary issues, though if I'm having a rough week, I do have to pee more. I have no idea if it's related. I DO have bowel issues (constipation, and sadly I've been bowel incontinent on 2 or 3 occasions in the past year and that has NEVER happened to me in my life before. It was no in conjunction with an illness or diarrhea).
I have been tested for just about everything under the sun, they've ruled out RA, Sjogren's, lupus, peripheral neuropathy, all my labs are normal, no B12 or other issues. I DO have low Vitamin D, but EMG was normal (Dr said I have an extraordinary pain tolerance, I didn't think it hurt at all!). I go back to see the EMG Dr (who diagnosed me with Fibro based on my tense/painful neck/shoulder and lower back, despite my lack of chronic pain that is a hallmark of the disease...)....and I am going to ask him to refer me to a neuro unless ya'll think I'm completely nuts and it's all in my head.... I hope you don't mind me running all this by you...
Thanks so much for listening.
Carey in Ohio
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
A (sort of) brief summary--
I've had a couple weird issues with my eyes over the past couple years. 2 different times I had my vision go blurry in one eye (If I remember correctly it was my left eye both times). There was like a blurry line that I could watch go across my field of vision-- made it so I couldn't read or anything out of that eye-- I had double vision while it was there and it just resolved on its own with no other issues. It took about an hour or so to resolve and came on very suddenly in the middle of the day, with no other symptoms. I also have days now where my eyes feel like they are "jiggling"-- not sure how else to describe it, but my perception is that my eyes are slightly jerking around making it hard to focus on things, but I don't see any obvious signs of actual twitching or jerking of the eye itself (I am scheduled to see an eye doctor tomorrow)
My main symptom, however, is debilitating fatigue that has gotten worse over the past couple years. I have crashes in the afternoon and my fatigue is much worse in the week before I start my period. I tried googling that issue to see if maybe it was hormonal and came across a study that said it's common for MS related fatigue to be worse -- you guessed it-- in the afternoons and in the week before periods start due to a natural rise on body temp during those times. Yay. It is not "just" fatigue...it is as if I've suddenly been hit with a tranquilizer dart at times, although I typically have low-mid grade fatigue every single day. I do not have sleep apnea nor do I snore or have any other sleeping issues that I am aware of. I sleep, on average, 8 1/2 hours per night, but it can range from 7-11 hours.
My balance is off, I stumble, I can't hold yoga poses that used to be easy for me. I have ringing in my left ear occasionally. I also have bouts of dizziness that can last briefly or up to several days. I have started to struggle with constipation. (TMI, but I hope it's ok). We bought a Squatty Potty (yes, one of those things that went viral on facebook, lol) and it has helped somewhat.More recently, I had issues walking for a few days. I felt like a marionette with how I was having to exaggerate my movements. And I use crutches around the house from time to time because it just feels better to have something to lean on when I'm having a bad day/week.
I've been getting numbness and tingling mostly down my left arm including my last 2 fingers, but I have had it to a lesser extent in my right arm. This has happened multiple times in the past couple months. I have a burning sensation in the palm of my left hand almost every day recently (past few months)Also, my legs twitch. Not restless leg stuff....but they literally twitch without any control-- like I'm being hit with electricity, and big twitches-- like my entire legs move/fly up or out.
My husband says it happens about a third of the time when he's home (he's a truck driver so only home weekends), sometimes it wakes me up, sometimes it does not. It doesn't happen when I'm falling asleep, it is more likely to happen in the early morning. It's also happened when I'm completely awake in the middle of the day. My left big toe twitches on a much smaller scale. My handwriting and typing have declined over the past couple years, as well. I cannot stand to text as it bother my hands quite a lot. My hearing in my left ear, and the vision in my left eye is weaker than in my right ear and eye. (I'm just realizing there is a pattern with much of my symptoms being on the left side of my body....hmmmm...)
Back in 2009, I started cycling and by 2010, I was cycling and running competitively. I lost 30 pounds, was in fantastic shape, and was racing several times a month, and training almost every day. Now, when I try and run or ride my bike, my hamstrings get really, really tight. They didn't do this before, this is a fairly new symptom (over the past 6 months)....if I am actually able to exercise for any length of time and really get warmed up or hot, I can have issues with being able to walk afterwards until I cool down.
My husband was at one of my races in May or June and had to catch me as I came across the finish line-- I couldn't feel my legs for about the last mile, and it was like there was no communication between my brain and legs. It took about 45 minutes to cool down and for me to be able to walk normally afterwards. It was really, really weird.
I also get these really weird, electrical like feelings in my head. Almost like a halo around it. It isn't painful, it's just a weird sensation. It always happens when I've had what I call a "crash" where I have a very extreme fatigue come on very suddenly (the whole tranquilizer dart thing) and I basically pass out and HAVE to sleep. I do not have a choice, I cannot function. And I am semi-conscious for some of it where I can hear what is going on around me but I cannot communicate, and I feel that weird electrical sensation, then I typically sleep/pass out for a couple hours and when I wake up, I am groggy, my speech is slurred and I sound and feel as if I've been drugged.
It almost seems seizure-like, but without any spasms or twitching.I haven't really noticed any urinary issues, though if I'm having a rough week, I do have to pee more. I have no idea if it's related. I DO have bowel issues (constipation, and sadly I've been bowel incontinent on 2 or 3 occasions in the past year and that has NEVER happened to me in my life before. It was no in conjunction with an illness or diarrhea).
I have been tested for just about everything under the sun, they've ruled out RA, Sjogren's, lupus, peripheral neuropathy, all my labs are normal, no B12 or other issues. I DO have low Vitamin D, but EMG was normal (Dr said I have an extraordinary pain tolerance, I didn't think it hurt at all!). I go back to see the EMG Dr (who diagnosed me with Fibro based on my tense/painful neck/shoulder and lower back, despite my lack of chronic pain that is a hallmark of the disease...)....and I am going to ask him to refer me to a neuro unless ya'll think I'm completely nuts and it's all in my head.... I hope you don't mind me running all this by you...
Thanks so much for listening.
Carey in Ohio
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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