Is this MS or something else?: I'm between... - My MSAA Community

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Is this MS or something else?


I'm between neurologists (next appt. w/new one is not until April) and my PCP won't be helpful, so here goes: two weeks ago, my left leg began waking me at night with pain, spasms and stiffness. The spasms moved around: sometimes the calf, sometimes the inner thigh, sometimes the foot with toes curling, sometimes the whole foot pulling up and not responsive when I tried to flatten it. About the same time, the left knee, no warning or pattern, would suddenly weaken. This past week, the inside of the knee has been very painful, at first constantly, now only when I try to raise my leg too high (e.g., when putting on shoes). I've been working around the problem, but today that leg has felt hot when I stand for longer than it wants to, then prickly. I try not to complain or bother disinterested doctors, but this is really getting on my nerves (hahahaha). I do have lesions on my cervical and thoracic spinal cord as well as on the brain, but haven't had a spinal cord MRI for 2 yrs, at which time nothing was active. I know in advance that most of us here are not doctors, but what does this sound like?

24 Replies

I'm no doctor, but it sounds like it could be MS. I would wonder if an MRI would be helpful at this point to look for new lesions, too.

Whatever is causing it, I sure hope you feel better soon. Let us know what you find out.

goatgal in reply to greaterexp

greaterexp Lilith08 Rosey Sawyer Thank you so much for being there when I needed to vent. If it persists past midweek, I will contact the MS clinic to see if I can get advice or help. Maybe there is a nurse practitioner on staff who can suggest options.

Lilith08 in reply to goatgal

Keep us posted!

I don’t have as much experience as others do but it sounds to me like it could be MS. I know there is help for spasms. The sudden weakness in your knee could be more of a problem if it causes you to lose control of your leg.

If these are new symptoms could it be a relapse? April is far away—can you still check in with your old neuro to report new symptoms? Does he/she treat exacerbations with steroids?

I'm no doctor but to me it sounds like some lesions are active. ❤🌷

I feel exactly the same way! I believe mine is something else. I am going to get checked for stenosis. Lot's of the same symptoms of MS. I'm not a doctor. I just know something else is going on with me. I have felt this way for over a year.

I have been doing as much walking on my treadmill as i can - only a mile. I used to walk and hike 8 miles or more - but i get those weak knee give out things that happen if i push it to hard. My sis that used to run marathons told me it was a “runner” thing and a sign i was pushing my body to far.

Not sure if that is helpful or not just putting it out there.

As for spasms - i used to have those keep me up at nite like i was being tortured. Baclofen helps and so does Volteran gel.

goatgal I am so sorry you are having these problems. My own experience similar to yours is especially the calf spasms and thigh, as well as the toes. My toes sTarted hurting so bad at night and having the “curl” it makes me want to cry they hurt so bad. My neuro told me that this is common in many of her patients. My hands are crazy too, they go into what I can best describe as claws and become useless. I neVer know how long it will last! I am sending you a warm, loving hug. Kelly xx

Sounds like something that you should be seen for...esp. Since last MRI was 2 yrs ago. In my mind, everything, including a hang nail = MS but it can certainly be something else or even an infection that's causing exacerbated MS symptoms. Hope u feel better 🌈

goatgal in reply to erash

erash Amore55 Midgey_Midge06 SometimesCrazy Thank you for listening. I sent an email to the MS Clinic but haven't heard back yet (it can take up to 3 days for non-urgent issues). Yesterday the knee was less painful, but the pain intensified last night, and this morning my left leg is very stiff. No wonder it took so long to get a diagnosis, with afflictions that come and go, wax and wane in intensity. By the time I hear back or get in to see someone, the symptoms could be gone, leading doctors to think I am making them up!! Unfortunately, this is real...and only I (and others here) seem to believe that I am not a hypochondriac. Usually I just put my head down and forge ahead, but this is something different. Thank you again.

erash in reply to goatgal

I agree. The unpredictability of MS makes it difficult :(

Lilith08 in reply to goatgal

I’ve slacked off keeping track of daily symptoms but when something has gone away for a while and returns, or I notice something new, I do tend to keep track—because lord knows I won’t remember the details later.

Have you tried the MS Manager app from MSAA? It’s pretty comprehensive and you can add notes, too. A good old notebook works well, until I lose it.

Not a doctor. But as a long term MS'r, yep, happens to me too. But I've found that if I double up on Magnesium Citrate, one in the morning, AND one before bed, the spasm's and the pain associated with them, the curling toes...AND the restless leg, all fail to appear. But, if I stop the evening dose....does not take long for them to reappear at night. I used to take lots of meds for these, and they worked, for a while. Had to keep tweeking the scripts, till I finally gave up. They went away after stopping ALL my scripts, but burning feet at night slowly crept in. Back to the scripts....lots of them over many years. Nothing really helped that. Gave up and contemplated the Sawzall at night, (to cut off my feet!) But found a solution for that too. CBD! Try magnesium citrate, and see if that doesn't help. Double dose, one in the am, and one in the pm. Keep up with your doc. But MAYBE? The Mg may do it? It's a vitamin. OK, even vitamin D can be overdone, as I've gone from script sized D doses recommended by my doctor to a small D every other day, per my bloodwork. Still living well off of all scripts and healthy eating.

Amore55 in reply to MarkUpnorth

Mark have you used any dmt’s at all? I haven’t been on any for almost a year, have PPMS so Ocrevus is my only choice. Don’t like the ms meds and wondered what your thoughts are? Thanks. Kelly


Hey goatgal,

Like MarkUpnorth, I take a magnesium supplement (as Dimagnesium Malate) with SRT (Sustained Release Technology). This form of magnesium doesn't irritate my digestive system. Plus I take baclofen, but only before I go to bed. This seems to do the trick, most of the time.

I have an issue of my left knee giving out. I fell last year and broke my leg because it gave out. But I am better now. When my knee acts up, I wear a sleeve. It helps. Partly for support, but mostly to remind me to take it easy!

Also, my hands sometimes feel like they are cramping up like crazy. I have noticed that applying some topical creams do work. But so does massaging, stretching, and applying heat/cold compresses.

Let your doctor know of your problems if and when you reach them. Don't feel like a hypochondriac, they are there to assist you in any way possible. It is difficult enough having ms, and then throw in the uncertainty of your medical care possibly being there when you need them. I have been there, but now I am blessed with a wonderful neuro. Makes all the difference.

Stay Strong,


Yes, I used DMT's most of my life with MS. Starting back to the day's of the ABC drugs, Avonex, Betaseron, and Copaxone. Then came the "new and improved drug", Rebif... Okay, never did Betaseron, or any of the new drugs now out, however by that time, with my intolerance to what was out there, the "official recommendations" were to not try and infuse yourself with a drug that would last a month at a time. I spend 2 - 3 years of essentially non-stop flue like symptoms, continually, only letting up for about a 1/2 day between doses on Rebif, why I tried Copaxone, which didn't help. Symptoms with the shakes too! I was devoted to the cause? Yes, I did everything possible at the time. Finally my main Neurologist, yes I had more than one concurrently (another story), told me to quit, because as he saw it, it wasn't helping me, and then he tells me, something like 80% of the patients on interferons, eventually become intolerant to them. Could he not have told me 2 - 3 years earlier? Did they do any good? I'll never know. Hope it was worth something. It did build up one heck of a war chest of med's, mostly fighting one drug side effect with another? When I stopped the DMT's, the whole house of cards (meds) collapsed and none were needed. Except then for the dysestgesia (burning aching feet at night). Since nothing worked for that, till CBD which I discovered at my neuro's suggestion when medical cannabis came to our state. Now CBD from hemp is available even on Amazon! Okay, the med cannabis CBD from cannabis works better, but even from hemp (legal in all 50 CBD), it's the only thing that ever worked, and I use it till today. Regarding the DMT's, you have to believe the studies, that it will help a percentage of patients, to some degree. I could be wheel chair bound if I didn't? The biggest change I noted, a life changer - NUTRITION. Look up Terry Whal's and the like. Eliminate processed foods. Go on a hunter gatherer diet. According to other doctors and scientists, if you go to remote places in the world where it is completely that diet out of necessity, or starve, none of the auto-immune diseases are present. Nor cavities, even though they don't have tooth brushes either! My relapses ended after a few years of "Nutrition". It's been over 5 years, and doc say's I'm probably done with them! Food for thought!

Lilith08 in reply to MarkUpnorth

I love to see positive results from diet! I’m doing the Autoimmune Protocol (AIP), which is similar to the Wahls diet.

Sorry, gotta ask, how did you get the title goatgal? I break my diet rules for goat milk cheese!

MarkUpNorth Thank you, first of all, for your several responses. I didn't vent about burning feet, but I have those too. It never occurred to me it might be the MS. (Yes, I know, it's not safe to let me out in the world...little rabbit foo foo.) I take Magnesium, but I will also try your suggestion about type and amount. I'll do anything (except Baclofen) to mitigate the night time spasms. Usually, I can stop them with a packet of yellow mustard (something I learned on the People's Pharmacy years ago) but I'd rather not have them than be awakened by them and have to eat mustard in the middle of the night! As for GoatGal, when I was diagnosed, I was living out my dream: 20 acres, 13 goats, 40 hens +-, barn cats, farm dogs, vegetable gardens, an outdoor bread oven, then Whammo, overnight reality reared its rational head. But I do love chevre, and goat gouda, and...and...and...

Lilith08 in reply to goatgal

Yellow mustard...I thought you were rubbing it on your legs! 😂🤣😂 Phew! But ingesting it really helps? Go figure!

Kind of spastic to me, do you have any Baclofen? that's what my Dr. put me on & it is worse in the summertime. Also try rubbing with any of the muscle rubs, hope this helps. Mary

I scrolled through and see you’ve got a plan! 🎉 I just want to add to what the others have said, my leg symptoms jump around too. I know what you mean about crazy symptoms, I didn’t mention some things to my MD in the beginning because I thought some were too bizarre and my list too long.

Please let us know what happens! I’m sorry this is happening to you. I do take extended release magnesium at night if I’ve been having trouble.

goatgal in reply to kdali

kdali Thanks for the affirmation! The pain comes and goes, but I am still hobbling and being very careful. This has happened before, but never so intensely or for so long. I wrote to the MS clinic three days ago, but haven't heard back yet. At my first appointment a year ago, I saw a neuro and a post doc. I saw the post doc for followup; both have since taken other positions. Now I have been assigned to a new hire but my appointment isn't until April. All calls are answered by a receptionist, but the system prefers going through the electronic chart system. It's frustrating. And if my past experiences hold, by the time I can see someone, the problem will have disappeared and I'll be told to let them know if it happens again.

Lilith08 in reply to goatgal

It’s soooo frustrating when they don’t get back to you—especially when they tell us to be sure to report symptoms!!! And we know that time is of the essence should we experience the beginnings of a bad relapse.

Wishing you success 🤞🏻

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