Something Really Scary Has Happened

[masterjen]

Two nights ago I had just gotten into bed, and the outside of my right foot felt numb - I don't think it really was numb because when I touched the area I could myself touching it, but it felt numb just sitting there. Then I noticed my toes on that side involuntarily flexing, then my foot. At first it was funny, then things got serious. The toes followed by foot on my other leg started up. About 20 minutes later muscles in both legs were involuntarily shaking (my legs were kind of rotating in and out for the most part, very rapidly) and I could also feel muscles in my lower trunk also going (but maybe this was because of the leg mov't - not sure). My left hand and arm twitched a few times, but this did not last. If I focused REALLY hard to relax the muscles, the leg twitching would almost stop (but not the toes and feet), but then it would start up quite violently for a couple of seconds then went back to what it had been. My butt felt numb during all this. This went on for 45 very scary minutes, then I had to pee (even though I just had gone less than two hours ago). I could walk ok, although my legs were tired and felt rubbery. I was left with a sensation of electricity running up and down my legs (not painful) when I got back into bed. and then I finally fell asleep. About 2-3 hours later I was awakened by burning legs, and then the whole scenario described above occurred again, also for 45 min. This time I got up and walked around for a few minutes (it seemed voluntary mov't stopped the shaking, but as soon as I sat on the edge of my bed with my knees bent (feet not touching the floor), the shaking started again in this position. Sheer fatigue forced me to lie down again, and around 30 min. later it calmed down, and I eventually fell asleep. The next day every part of my body (including my face) felt numb (although I certainly had tactile sensations, could walk and do things, albeit with a bit of clumsiness).

Last night I had the exact same thing when I got into bed, but it was not quite as intense or long-lasting, and I did not have a second bout a few hours later. Today the all-over numb sensation has lessened but is still there, although my butt still feels numb, and typing this makes my forearms feel very heavy.

I already have neurology and rheumatology (to check for other autoimmune problems because of 4+ months of fatigue, chronic low-grade headaches and muscle weakness) appointments coming up in a couple of weeks, but after these incidents above I am scared, to say the least. Does anyone know what might be going on? I googled RLS, and it sounds like with this the muscle mov't is voluntary because there is an urge to move the legs. I know I will be finding out when all these appointments and potential tests are completed, but knowing this does not alleviate the fear .

[Looking for answers]

Two nights ago I had just gotten into bed, and the outside of my right foot felt numb - I don't think it really was numb because when I touched the area I could myself touching it, but it felt numb just sitting there. Then I noticed my toes on that side involuntarily flexing, then my foot. At first it was funny, then things got serious. The toes followed by foot on my other leg started up. About 20 minutes later muscles in both legs were involuntarily shaking (my legs were kind of rotating in and out for the most part, very rapidly) and I could also feel muscles in my lower trunk also going (but maybe this was because of the leg mov't - not sure). My left hand and arm twitched a few times, but this did not last. If I focused REALLY hard to relax the muscles, the leg twitching would almost stop (but not the toes and feet), but then it would start up quite violently for a couple of seconds then went back to what it had been. My butt felt numb during all this. This went on for 45 very scary minutes, then I had to pee (even though I just had gone less than two hours ago). I could walk ok, although my legs were tired and felt rubbery. I was left with a sensation of electricity running up and down my legs (not painful) when I got back into bed. and then I finally fell asleep. About 2-3 hours later I was awakened by burning legs, and then the whole scenario described above occurred again, also for 45 min. This time I got up and walked around for a few minutes (it seemed voluntary mov't stopped the shaking, but as soon as I sat on the edge of my bed with my knees bent (feet not touching the floor), the shaking started again in this position. Sheer fatigue forced me to lie down again, and around 30 min. later it calmed down, and I eventually fell asleep. The next day every part of my body (including my face) felt numb (although I certainly had tactile sensations, could walk and do things, albeit with a bit of clumsiness).

Last night I had the exact same thing when I got into bed, but it was not quite as intense or long-lasting, and I did not have a second bout a few hours later. Today the all-over numb sensation has lessened but is still there, although my butt still feels numb, and typing this makes my forearms feel very heavy.

I already have neurology and rheumatology (to check for other autoimmune problems because of 4+ months of fatigue, chronic low-grade headaches and muscle weakness) appointments coming up in a couple of weeks, but after these incidents above I am scared, to say the least. Does anyone know what might be going on? I googled RLS, and it sounds like with this the muscle mov't is voluntary because there is an urge to move the legs. I know I will be finding out when all these appointments and potential tests are completed, but knowing this does not alleviate the fear .

I don't have any answers, but I do know what it's like to have something scary happen with your body and have no idea what it could be. I will keep you in my thoughts and prayers.

[ciavyn]

masterjen -- I didn't find anything online that didn't sound terrifying, so just try to be calm and wait for the results. Though I know that is WAY easier said than done. I would be beside myself in your shoes. I hope and pray it is no big deal.

[Skylark]

Don't wait a couple weeks. Call your primary care doctor!

[kareng]

Wow! I probably would have called an ambulance. Your interests say you work for an ENT, I know they are probably a different dr then you need, but you might asked around the office. Maybe a nurse or doctor could give you some thoughts.

[conniebky]

Wow! I probably would have called an ambulance. Your interests say you work for an ENT, I know they are probably a different dr then you need, but you might asked around the office. Maybe a nurse or doctor could give you some thoughts.

Or you could ask the physician that you work for if he can get you in sooner, because I used to work for a doctor and you'd be surprised who knows who and how quickly you can get in. I would definitely ask him.

[gabby]

These sorts of problems require immediate attention, so going to the ER is always a good idea. Definitely call your primary care physician and see him/her today. If you can't, then go to a walk-in clinic today. And call your colleagues at the ENT clinic too and see what they can do for you too. Bring a list of any meds you are taking (including herbal remedies, teas, etc). And try to think if anything has changed recently like new furniture that might be outgassing, newly painted floors, new rugs, weed-killer being sprayed on nearby lawns, etc. The more info you have, the better.

Hope everything turns out ok.

[ravenwoodglass]

I hope you have been to the doctor by now. Let us know how your doing when you can. That sounds like it was pretty scary and I wouldn't wait to get it checked out.

[bluebonnet]

just sent one up for you ... i hope you get answers (good news) quickly.

[T.H.]

You might to check out multiple sclerosis on-line to see if your symptoms match up. this sounds somewhat similar to how it started for my friend with MS, if I recall right.

Two nights ago I had just gotten into bed, and the outside of my right foot felt numb - I don't think it really was numb because when I touched the area I could myself touching it, but it felt numb just sitting there. Then I noticed my toes on that side involuntarily flexing, then my foot. At first it was funny, then things got serious. The toes followed by foot on my other leg started up. About 20 minutes later muscles in both legs were involuntarily shaking (my legs were kind of rotating in and out for the most part, very rapidly) and I could also feel muscles in my lower trunk also going (but maybe this was because of the leg mov't - not sure). My left hand and arm twitched a few times, but this did not last. If I focused REALLY hard to relax the muscles, the leg twitching would almost stop (but not the toes and feet), but then it would start up quite violently for a couple of seconds then went back to what it had been. My butt felt numb during all this. This went on for 45 very scary minutes, then I had to pee (even though I just had gone less than two hours ago). I could walk ok, although my legs were tired and felt rubbery. I was left with a sensation of electricity running up and down my legs (not painful) when I got back into bed. and then I finally fell asleep. About 2-3 hours later I was awakened by burning legs, and then the whole scenario described above occurred again, also for 45 min. This time I got up and walked around for a few minutes (it seemed voluntary mov't stopped the shaking, but as soon as I sat on the edge of my bed with my knees bent (feet not touching the floor), the shaking started again in this position. Sheer fatigue forced me to lie down again, and around 30 min. later it calmed down, and I eventually fell asleep. The next day every part of my body (including my face) felt numb (although I certainly had tactile sensations, could walk and do things, albeit with a bit of clumsiness).

Last night I had the exact same thing when I got into bed, but it was not quite as intense or long-lasting, and I did not have a second bout a few hours later. Today the all-over numb sensation has lessened but is still there, although my butt still feels numb, and typing this makes my forearms feel very heavy.

I already have neurology and rheumatology (to check for other autoimmune problems because of 4+ months of fatigue, chronic low-grade headaches and muscle weakness) appointments coming up in a couple of weeks, but after these incidents above I am scared, to say the least. Does anyone know what might be going on? I googled RLS, and it sounds like with this the muscle mov't is voluntary because there is an urge to move the legs. I know I will be finding out when all these appointments and potential tests are completed, but knowing this does not alleviate the fear .

[masterjen]

Hi, and thanks for the responses - this is a GREAT community we have here. People who don't even know each other expressing empathy, sympathy and concern through a related affliction . . . it's incredible.

As silly as it may sound, even at the time the first episodes occurred, part of me knew I should get into emergency, but I was frightened by what so going on to the degree that the other part of me coped by "burying my head in the sand" and wishing it away. I finally talked with my brother about it (who lives nearby) and he agreed to drive me to ER should it happen again. Sure enough, last night it happened, and we went up the hospital. I was immediately admitted (to the emergency) and treated as a neuro. case, which gave me some priority, I guess. The shaking this time lasted for almost 3 hours (prev. had been 30-45 min). To be honest, I was hoping they might do an MRI of my brain and/or spinal cord, but because both my legs were in spasms (ie. bilateral), it was felt that a bilateral "lesion" or something was unlikely because usually just one side is affected. They did check out my electrolytes (not sure which specifically, but was told most of them) and unfortunately they were all fine (unfortunately, because a severe imbalance in something would have been such a nice, easy answer ("yup, your B12 levels are in the toilet, so you need injections"). H -m-m . . . Well, they did give me ativan around 1:30 AM (which I've never had before) as a way to calm the muscles down, and it worked, but wholly cow: here it is 9:30 AM I still feel like I'm in this total fog!!

I have an appointment with my GP today to follow up after the ER business, so I'll see what she has to say.

Again, thanks for the support.

[tarnalberry]

Just wanted to add - RLS movements are NOT necessarily voluntary, but they also do NOT fit thr description you give.

[JNBunnie1]

Just wanted to add - RLS movements are NOT necessarily voluntary, but they also do NOT fit thr description you give.

I also wanted to add, I have a friend who's been diagnosed with Ms, and she does have bilateral symptoms. It's rare, but it happens. Don't let them brush that off. I'm not saying this to scare you, but it's something to be aware of.

[gabby]

There is a rather rare group of disorders falling under the umbrella term: Periodic Paralysis Syndrome (PPS). Don't let the name fool you, because the word paralysis does not always refer to constant or permanent paralysis. It can also refer to the clenching and unclenching of certain muscles (like when you are shaking...it feels constant, but it can really be muscles holding and letting go really fast over and over again.) The paralysis can also be something not working properly in an organ.

There are two heavily studied forms of PPS which involve a problem with the way the body handles potassium. There is Hypokalemia Periodic Paralysis Syndrome involving potassium getting too low. and Hyperkalemia Periodic Paralysis when too much potassium builds up in your body.

There are treatments for both of these involving diet and medication. These conditions are both rare types of something related to muscular dystrophy, so it would be a good idea to get a consult with a neurologist who specializes in muscular dystrophy because they will know how to proceed.

Between now and your doctor appointments, keep a detailed food and activity diary because they will want to see how your potassium intake is, plus your carb intake.

These disorders are worth looking into, even if it is just to rule them out because muscle weakness doesn't just affect your arms, legs and torso, it also affects the heart and breathing muscles.

Best of luck in figuring out what is going on, and getting treatment quickly.

Here's a link on hypokalemia: Open Original Shared Link

[frieze]

be aware that ativan is in a class of drugs called "anxiolytics", used to treat anxiety......be prepared for the docs to think that is what your problem is....good luck

[masterjen]

be aware that ativan is in a class of drugs called "anxiolytics", used to treat anxiety......be prepared for the docs to think that is what your problem is....good luck

Thanks for the warning! I'll be "ticked off" if they attribute what's going on to anxiety - that's like physicians saying it's all in my head and therefore they are not going to try to find a physical cause. How can it be anxiety-related when it happens at the most relaxed time of the day (in bed and either reading or beginning to "zone out" to sleep), and how could anxiety have caused the symptoms to wake me up from a peaceful sleep 2-3 hours later?? Besides, the ativan hasn't really been working anyway . . .

[Skylark]

be aware that ativan is in a class of drugs called "anxiolytics", used to treat anxiety......be prepared for the docs to think that is what your problem is....good luck

Ativan is also anticonvulsant and a muscle relaxant. Don't assume doctors are writing you off. I'm sorry it's not helping.

[minamoo]

I don't know if this will be of any help to you, but I had in the past months involuntary muscle twitching around my body which made it difficult to sleep, my Hermetologist explained it was due to lack of Vitamin B-12 which you take with Folic Acid and lack of Vitamin D.

Due to the years I had untreated Celiac disease the Intrinsic Factor in my stomach got damaged and I now consume B-12 and Folic Acid with drops under my tongue.

I've also been spending some 15 minutes a day in direct sunlight without sunscreen to get enough vitamin D.

The muscle twitches are completely gone and I have more energy.

[Bobbijo6681]

Also if they were checking for B12 in order to get a true reading (from what my lab told me) they have to do the methamalonic Acid as well. That specific test can take a few days to come back, so it is possible that the hospital did not run the B12. Maybe something to ask your GP.

[masterjen]

Just an update: My GP was able to move the neuro. appointment to Thurs. May 27 from June 4! Symptoms are continuing, so fortunately I will (hopefully) get some answers sooner rather than later. Also, I wanted to thank everyone for their input and support!!

[JNBunnie1]

Just an update: My GP was able to move the neuro. appointment to Thurs. May 27 from June 4! Symptoms are continuing, so fortunately I will (hopefully) get some answers sooner rather than later. Also, I wanted to thank everyone for their input and support!!

So, how'd it go Jen?

[masterjen]

Thanks for caring I've still been getting these "seizures", mostly at night. The neurologist I went to on the 27th of May was INCREDIBLE!! Very caring, attentive, interested, professional, and knowledgeable. He sent me for a screening CT later that same day (he must have "pull" at the hospital, as normally in my part of the world one would wait at least a month for a CT scan) to look for any emergent issues like aneurysms, brain tumors, bony growths, and narrowed blood vessels. Nothing showed up, as he expected (but they needed to be ruled out), and I now have an EEG booked for June 1 (also usually a long wait). He has tentatively diagnosed focal seizures, and has given me anti-seizure medication to take before bed (since these seizures or whatever they are usually occur at night), however I cannot take the med. for 48 hours before the EEG (which means nothing tonight and tomorrow night), so I'm a little uneasy about how the next 48 hours will go. Depending on what the EEG shows (or doesn't show), he will send me for an MRI (almost a 2-year waitlist here in BC, Canada!!) I'll let you know if I got electrocuted or not after the EEG on June 1st (lol . . . ).

[conniebky]

Hey Jen !

I've been reading this thread a couple of times a day. I'm so glad that you got the CT scan. I still don't understand why they didn't do that at the ER, but I'm glad you got one.

June 1st is almost here. Please keep us posted. I'm SO feeling you on this - and thinking of you and praying and all those things.

[masterjen]

Didn't get electrocuted during the EEG (lol). Interesting experience; some minor version of shaking/seizures were triggered, so I hope this means there will be some answers (had to breathe following a certain pattern for part of the test, look at strobe lights in various patterns through closed eyelids, and open and close my eyes in a certain pattern for another part while readings were taken. Hoping for results tomorrow, but might not come in until Monday or Tuesday. Again, thanks to everyone for their support and good wishes - will keep you posted.

[ravenwoodglass]

Didn't get electrocuted during the EEG (lol). Interesting experience; some minor version of shaking/seizures were triggered, so I hope this means there will be some answers (had to breathe following a certain pattern for part of the test, look at strobe lights in various patterns through closed eyelids, and open and close my eyes in a certain pattern for another part while readings were taken. Hoping for results tomorrow, but might not come in until Monday or Tuesday. Again, thanks to everyone for their support and good wishes - will keep you posted.

I am glad the testing went well for you. I hope they have some answers for you soon. Let us know what they find. Like many others here I have kept you in my thoughts and prayers.