Last reply 1 year ago
Unusual MS symptoms?

Anybody get “atypical” MS symptoms? Muscle twitching, scintillating scotoma, or stabbing head pain?

Or… something else that isn’t “textbook”?

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jacques11-11-11
1 year ago

Stabbing head pain from time to time. It’s mostly on the right side of my head. I go for MRI’s as I should and they’ve never seen ‘anything else’ that I should worry about. The pain is only for seconds and doesn’t happen too often. It’s strange but can live with it…


Anonymous
1 year ago

I had scintillating scotoma that was different from my migraine (it didn’t move but just stayed there for days) during my big relapse. I also had, and still have on occasion, a few other transient visual disturbances which are not migraine and my Neuro can’t explain them.

I think there is a connection between migraine and ms though. I also have twitching that feels like ‘space dust’ exploding under my skin.


isaacson72
1 year ago

I get that stabbing head pain – I can’t really call it a headache. It doesn’t last long at all, just a very localized, stabbing pain. My neuro suggested I take magnesium… and it has gone away! He suggested I take the recommended dose from whatever vitamin company I choose, but I have the Natural Calm powder that has magnesium & calcium and I have a glass of that every night. It’s not 100% of your daily mg, it’s more like 70-80% but it’s good enough. That, combined with my 30 mg of amitriptyline every day has kept both that weird stabbing pain, and most headaches/migraines, at bay for me.

I’m interested in anybody else who has weird twitches though. I get those in my hands/fingers a lot and I’m always worried that I’m going to end up with Parkinson’s on top of MS. But I’ve also heard it can happen with MS although I’ve never heard of this from a first-hand MS person.


potter
1 year ago

I have had twitches in my fingers for a long time, usually it doesn’t cause me much problems except when I am on the computer. My finger will twitch and add a extra letter and maybe delete everything, I get twitching in my leg muscles at night. I use to have leg cramps but haven’t had those for 9 years when I started physical therapy. Sometimes the twitching really hurts feels like electricity running through my finger. It can twitch 3 to 4 times in rapid succession. Is this the kind of twitching you are referring to, I also get stabbing pains in my legs like someone is sticking a pin in my leg. I am old enough I would have other signs of Parkinson, I don’t. I have asked my neuro about the pin sticks and twitching and he said it’s nothing to worry about. Potter


isaacson72
1 year ago

Mine isn’t quite like that – no electricity running through my fingers. Just like, involuntary finger movements. Mostly my left hand. I know my left hand also has grip issues – my neurologist was very quick to point out that my left hand doesn’t seem to work quite as well as my right. Maybe it’s part of that? I didn’t think to mention the weird jerkiness of my fingers. It’s not that noticeable but every now and then I do notice it – it’s totally involuntary. Doesn’t affect me very much. I work in front of a computer all day and I think actually typing helps because my fingers are too busy typing to move involuntarily. But when I’m just sitting there reading or whatever, I notice my fingers moving a bit on their own. So strange.


laurenm
1 year ago

I’m not sure how a-typical this is, but I’ve never had it before and my Neuro hasn’t seen it either…
On my right side just on my bra line, I have searing pain and it has been constant since October.
When i first got it, it hurt so much I passed out at the airport. I had steroids, and it removed the pain from my back, but not just on my right side ribs. It feels like someone has a grater and are running up and down my skin.

has anyone had anything like this before?


potter
1 year ago

I have a pain on the right side of my shoulder blade, for a while I couldn’t do exercises on the floor because I couldn’t get up off the floor. I do have another weird symptom, this started before I was diagnoses, my big toe on my left foot would swell up, turn bright red and even get a water blister. After a week of this my toe nail would turn into a U shape, my GP sent me to a foot doctor. He surgically removed a lot of the toe nail and let it grow back straight. It happened again, more surgery, It happened again this time I had the toe nail removed. There was never any sign of infection, bacteria or fungus. I have been having some flare ups this week from old lesions and my toe is swelling and turning red and some of my other toes are burning. I hope I don’t have to remove the rest of my toe nails. Potter


highheeledfagin
1 year ago

I have twitches but they seem pretty textbook, to me – I know I’ve read about it and the doctor wasn’t at all surprised. My neuro considered botox for the one around my mouth but instead opted for Gabapentin as targeting that precise spot could prove difficult.

A few weeks ago, one of my fingers started twitching. It wasn’t constant but would happen throughout the day, so I got strict about not missing Gabapentin doses and it stopped.


isaacson72
1 year ago

@potter – that is so strange. A very similar thing happened to me a couple years ago, but it was my thumb. I banged it on the cupboard but not that hard. Not hard enough for anything to hurt but that thumb got super hot and swollen! It lasted for a couple of days and went away. I didn’t think much of it. Then it happened again! Now I wonder if that was some weird ms reaction??? Thankfully no blisters like your toe, though. How strange.


potter
1 year ago

Isaac I think mine has something to do with my MS because they started burning at the same time I am having trouble with numbness in my legs if I stand to long. I am glad the ice packs work, when the burning tingling starts I grab the ice and it take care of it in about 30 minutes. Potter


asurf777
1 year ago

Thank you all for your replies. I’m new to MS, and I am going to go see a specialist next week. I wondered if anyone else had symptoms my doc says are atypical.

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