Hi, my name is Brooke, and I'm a wife, mother of 2, and am about to be evaluated for MS later next month.
I'm going to see a neurologist May 21st, and in the meantime, kind of wanted just to pick the brains of those who have MS. Either to set my mind at ease, or let me know I'm headed in the right direction.
Here's my issue:
I've had bouts of vertigo and being "off balance" off and on for years, but I usually attributed it to having a sinus infection or something along those lines. Well, in the past few months I've had 3 bouts of vertigo, which is much more frequent than I used to have it (maybe 1x ever year or so). In each case, there was no evidence of ear or sinus infection. They all follow the same course: One day of intense room spinning with any head motion (up, down, left, right, turning a corner, rolling over), followed by a few days of just sort of feeling like you're leaning left or right, and just having general balance troubles, and then gradually subsides over the course of 2-3 days. Well, this last/third bout has lasted 4 weeks, as of tomorrow. Started off with intense vertigo while lying on my back in Pilates class, and it was so bad, I had to have a friend drive me home, and actually got sick.
At first, I was just going to wait it out, but after over a week of only minor improvement, I went to see the doctor. I was convinced it was BPPV, as was my doctor, and so after peeking in my ears and nose to rule out anything like an infection, she sent me to the PT for Epley Maneuvers. PT was convinced it was the same thing...until we'd tried Epley and a few other BPPV maneuvers twice, and I was still having issues, and not just when I looked down or held my head a certain way. Sometimes it's even just walking straight, I'll suddenly kind of veer left or right, and then have to correct myself. At that point the PT said she thinks it might be neurological, and to consult with a neurologist. Since then, it's mostly just been a sort of drunken Jack Sparrow issue. Now it's almost gone, except for once in a while, but I'm starting to wonder about it being part of a larger pattern.
Well, here's what has me wondering if it could, possibly, be MS:
1. While Vertigo isn't generally listed as a major symptom of MS, I've seen TONS of people describe it as what tipped them off something was wrong, leading to diagnosis. And it's not always spinning - sometimes it's just a vaguely off-kilter feeling, or walking, and suddenly kind of losing my balance to the left or right, and having to take a stutter step to regain balance.
2. I have also been diagnosed by a geneticist with Ehlers-Danlos Syndrome (Classic type), and there is at least one study suggesting there is an increased chance (10-11x) of developing MS if you have EDS.
3. I have dealt with things like odd pins and needles and sensations almost like a pin was jabbing me in various body parts for years. Almost daily. Doesn't correspond with positions you generally think of as causing a part to fall asleep. For example, I'll just be sitting on the couch, or lying flat in bed and my toes or fingers will start sparking up with that pins and needles feeling, or I'll get a feeling like someone is poking me with a pin in various parts of my body (arm, leg, etc.). It never really occurred to me until now that this could be something to be concerned about. I just found it really, really annoying when it happens. I'm not overweight or out of shape, so it really shouldn't be anything along those lines.
4. In the past couple years I've noticed that I will sometimes drop things I *think* I have a good grip on. Generally I have a good grip, but then suddenly, plop, whatever it is is on the floor, and I'm not sure how it happens. But I haven't noticed anything like paralysis. Everything works - I just lose my grip. Vegetable Peeler, shampoo in the shower, kitchen knife (yeah, I know, right?)
5. I'm losing words left and right. Frequently, I'll be talking to someone and I just cannot come up with the next word, and I'll have to pause for several seconds. Sometimes it comes to me, sometimes it doesn't. I'm also starting to catch myself meaning to type one word, and instead typing a different, but similar word (that may make NO sense in the sentence). It's like my brain can't find the word I want so it just substitutes a different one.
6. Geneticist noted that I have highly exaggerated deep tendon reflexes when she was doing her physical exam on me. PCP noted the same thing when I was at an OB appointment years ago (I didn't remember that, but my husband did, and reminded me). Doesn't bother me (that I've noticed), but I did see it listed as something sometimes associated with MS. It was apparently of enough note for the geneticist to put it in her report on my EDS diagnosis.
7. Even when it's warm out, I've noticed that when I'm walking any decent distance, one or both big toes, and the pad of my foot where my big toe attaches will go numbish. Not to the point that i can't feel it at all, but sort of asleep feeling. Sensation always comes back, but it's something I've noticed as odd over the past couple years.
8. I've had at least two occurrences in the past year where I had really, really odd vibration/electrical shock sensations in my limbs. One was, randomly, my arm felt like it's vibrating. Honestly, the best description is it feels like there's a cell phone on vibrate, but IN my arm. So very weird. The other was feeling like there was an electrical shock going up my shin every time I stepped. That may just have been some kind of pinched nerve, but it did happen twice in the past 12 months.
9. My doctor noticed a tremor in my hands about a year ago, but she was about to put me on beta blockers for POTS (Postural Orthostatic Tachycardia Syndrome - also stemming from EDS), so coincidentally, the tremor is fairly regulated with the beta blockers. I still see it crop up now and then - especially when I'm really fatigued. It can be quite annoying - especially when I sing in a choral setting, and have to hold my folder for a while. It can be hard to hold the folder still after a while because of the shaking (and it's not nerves).
Now, I am not totally convinced I have MS. I do realize that each of these things can be a symptom of any number of things - including just being a tired mom, or even just my EDS, BUT taken together, it's starting to make me wonder, and my husband, who is usually my biggest source of reality checks, and quick to tell me if he thinks I'm being overly anxious about something, is also concerned. As he put it, "As I'm reviewing the mental video tape of our 13 years together, I'm starting to see a pattern, and think you might have MS." (he has a co-worker who has MS, so he's seen some similarities)
I thought it might be helpful to ask those who have "been there, done that" and see if I'm just being silly, or if this sounds familiar to any of your stories of early diagnosis.
I'm going to see a neurologist May 21st, and in the meantime, kind of wanted just to pick the brains of those who have MS. Either to set my mind at ease, or let me know I'm headed in the right direction.
Here's my issue:
I've had bouts of vertigo and being "off balance" off and on for years, but I usually attributed it to having a sinus infection or something along those lines. Well, in the past few months I've had 3 bouts of vertigo, which is much more frequent than I used to have it (maybe 1x ever year or so). In each case, there was no evidence of ear or sinus infection. They all follow the same course: One day of intense room spinning with any head motion (up, down, left, right, turning a corner, rolling over), followed by a few days of just sort of feeling like you're leaning left or right, and just having general balance troubles, and then gradually subsides over the course of 2-3 days. Well, this last/third bout has lasted 4 weeks, as of tomorrow. Started off with intense vertigo while lying on my back in Pilates class, and it was so bad, I had to have a friend drive me home, and actually got sick.
At first, I was just going to wait it out, but after over a week of only minor improvement, I went to see the doctor. I was convinced it was BPPV, as was my doctor, and so after peeking in my ears and nose to rule out anything like an infection, she sent me to the PT for Epley Maneuvers. PT was convinced it was the same thing...until we'd tried Epley and a few other BPPV maneuvers twice, and I was still having issues, and not just when I looked down or held my head a certain way. Sometimes it's even just walking straight, I'll suddenly kind of veer left or right, and then have to correct myself. At that point the PT said she thinks it might be neurological, and to consult with a neurologist. Since then, it's mostly just been a sort of drunken Jack Sparrow issue. Now it's almost gone, except for once in a while, but I'm starting to wonder about it being part of a larger pattern.
Well, here's what has me wondering if it could, possibly, be MS:
1. While Vertigo isn't generally listed as a major symptom of MS, I've seen TONS of people describe it as what tipped them off something was wrong, leading to diagnosis. And it's not always spinning - sometimes it's just a vaguely off-kilter feeling, or walking, and suddenly kind of losing my balance to the left or right, and having to take a stutter step to regain balance.
2. I have also been diagnosed by a geneticist with Ehlers-Danlos Syndrome (Classic type), and there is at least one study suggesting there is an increased chance (10-11x) of developing MS if you have EDS.
3. I have dealt with things like odd pins and needles and sensations almost like a pin was jabbing me in various body parts for years. Almost daily. Doesn't correspond with positions you generally think of as causing a part to fall asleep. For example, I'll just be sitting on the couch, or lying flat in bed and my toes or fingers will start sparking up with that pins and needles feeling, or I'll get a feeling like someone is poking me with a pin in various parts of my body (arm, leg, etc.). It never really occurred to me until now that this could be something to be concerned about. I just found it really, really annoying when it happens. I'm not overweight or out of shape, so it really shouldn't be anything along those lines.
4. In the past couple years I've noticed that I will sometimes drop things I *think* I have a good grip on. Generally I have a good grip, but then suddenly, plop, whatever it is is on the floor, and I'm not sure how it happens. But I haven't noticed anything like paralysis. Everything works - I just lose my grip. Vegetable Peeler, shampoo in the shower, kitchen knife (yeah, I know, right?)
5. I'm losing words left and right. Frequently, I'll be talking to someone and I just cannot come up with the next word, and I'll have to pause for several seconds. Sometimes it comes to me, sometimes it doesn't. I'm also starting to catch myself meaning to type one word, and instead typing a different, but similar word (that may make NO sense in the sentence). It's like my brain can't find the word I want so it just substitutes a different one.
6. Geneticist noted that I have highly exaggerated deep tendon reflexes when she was doing her physical exam on me. PCP noted the same thing when I was at an OB appointment years ago (I didn't remember that, but my husband did, and reminded me). Doesn't bother me (that I've noticed), but I did see it listed as something sometimes associated with MS. It was apparently of enough note for the geneticist to put it in her report on my EDS diagnosis.
7. Even when it's warm out, I've noticed that when I'm walking any decent distance, one or both big toes, and the pad of my foot where my big toe attaches will go numbish. Not to the point that i can't feel it at all, but sort of asleep feeling. Sensation always comes back, but it's something I've noticed as odd over the past couple years.
8. I've had at least two occurrences in the past year where I had really, really odd vibration/electrical shock sensations in my limbs. One was, randomly, my arm felt like it's vibrating. Honestly, the best description is it feels like there's a cell phone on vibrate, but IN my arm. So very weird. The other was feeling like there was an electrical shock going up my shin every time I stepped. That may just have been some kind of pinched nerve, but it did happen twice in the past 12 months.
9. My doctor noticed a tremor in my hands about a year ago, but she was about to put me on beta blockers for POTS (Postural Orthostatic Tachycardia Syndrome - also stemming from EDS), so coincidentally, the tremor is fairly regulated with the beta blockers. I still see it crop up now and then - especially when I'm really fatigued. It can be quite annoying - especially when I sing in a choral setting, and have to hold my folder for a while. It can be hard to hold the folder still after a while because of the shaking (and it's not nerves).
Now, I am not totally convinced I have MS. I do realize that each of these things can be a symptom of any number of things - including just being a tired mom, or even just my EDS, BUT taken together, it's starting to make me wonder, and my husband, who is usually my biggest source of reality checks, and quick to tell me if he thinks I'm being overly anxious about something, is also concerned. As he put it, "As I'm reviewing the mental video tape of our 13 years together, I'm starting to see a pattern, and think you might have MS." (he has a co-worker who has MS, so he's seen some similarities)
I thought it might be helpful to ask those who have "been there, done that" and see if I'm just being silly, or if this sounds familiar to any of your stories of early diagnosis.
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