Possible MS Symptoms No DX yet. - My MSAA Community

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Possible MS Symptoms No DX yet.

stacieann1989
stacieann1989

Hi, everyone.

Over the last 5 years I have been diagnosed with endometriosis, Antiphospholipid syndrome, Fibromyalgia, and Lupus (currently in remission of lupus).

For the past year I have been getting some odd symptoms, my main concern being muscle twitches. Sometimes they can be small, not noticeable by other people, or they can be really jerky and sudden, sending my limbs flying all over the place. I've noticed they seem to come and go. I do get them every day but they get worse when I'm feeling worse. Rehumy finally sent me for an EMG and MRI scan of head and spine. I had the EMG - results came back fine. I had an MRI three weeks ago and I am still waiting for results.

Now I've got a new symptom. (Like I needed anymore!) The way I explained it to my neurologist was that it feels like the muscles, normally in my legs, slowly tighten and then release before they go into a full on cramp. I've just kind of gotten on with it, but now there's one muscle in particular that is really bothering me, right behind the knee of my left leg, it goes into a full on cramp unless I move quick enough to chance position, then it aces for about a minute afterwards. I can't cross my legs or bend my knee at all now when I sit down. So, I guess, does anyone with MS have similar symptoms?

I try not to think that it could be MS, but at the same time I want to try and prepare myself for it, rather than be in total shock if that was the case, if that makes sense.

That was a bit longer than I panned it to be, but thanks for reading :) Any comments would be greatly appreciated.

Take care.

Stacey x

12 Replies
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Hidden
Hidden

So sorry to hear all of the conditions you're dealing with, and at such a young age. I certainly hope you don't have MS added to your list of conditions. I had a number of tests MRI (which showed a couple of brain lesions), EEG, cognitive testing, balance and coordination assessments, etc. After having a spinal tap and finding antibodies in my spinal fluid, together with the results of other tests, the doctor stated "my best guess is that you have MS". It explained a number of symptoms (including muscle twitches, dizzyness, balance and memory problems, foot drop, etc) that I'd been having, which I'd just attributed to older age. My simplistic understanding is that several of your diseases entail your immune system attacking your body. MS involves your immune system crossing the blood brain barrier and attacking the myelin sheath around your nerves in the brain causing the lesions shown from my MRI. Again this is my understanding, which is likely incomplete and may be inaccurate. I hope MS is not added to your list if diseases. My heart goes out to you. I hope the Dr's can help manage your symptoms. No doubt others in this community who have been dealing with MS and other diseases can better understand what you're going through and be of more help. You are in my prayers.

stacieann1989
stacieann1989 in reply to Hidden

Thank you so much for your kind reply, and thanks for giving what guidance you can, appreciate it. xx Hope you're as well as can be xx

Hi stacieann1989 , sorry about your issues. My ms started with twitches in right leg. I would have them when I started to walk and I worked about falling but they were just seconds. I. still have them off and on. Funny that it started in right side as my left side is where I have most issues now, weakness , drop foot.

I go have off and on what I would describe as a temp stiffing of muscles. Like a hard rigor but something just lower body. Just lasts seconds.

I was told I had fibromyalgia for 10 or so years. But I think it was always ms. I think the dr I was using was just stuck with his diagnoses and wouldn't accept being wrong. I had to go to about 6 or so drs until I found one that diagnosed it , he was a neurosurgeon and he sent me to a neurologist who read MRI , send me for another MRI and did spinal test. Spinal fluid was inconclusive but brain showed lesions on c2 spine and left side of brain.

I don't often have cramps but I have twitches and muscle movement that I feel but I don't know that I can see or that anyone else can see.

Do hot baths make you weak? Put your chin to your chest, do you feel any electric from your spine? I would have been diagnosed years earlier if the dr I was seeing had asked me to these 2 things. All people do not have these two issues but I have both. Does heat bother you as in going outside in summer?

Just some thoughts. Hope you don't have ms!!! Sounds like you have enough already!

Thanks for the long and informative respone. I've also started with twitches and have been diagnosed with fibro for two years x Thanks for explaing your symptoms. Although it's not nice you're going through this, it's nice to know I'm not alone. Yes, hot baths make me weak and dizzy. I have to have it luke warm. I adore summer but now i can't handle it. When I put ky chin to my chest I don't feel anything - but - It's funny you said this because I do feel almost like a twinge/eleteic shock type feeling up my neck and into my head when certian muscles twitch in my leg. I've also discovered that if i touch the skin between my left colat bine and neck, it send a pain down my arm into my hand. How odd is that? Thanks again for your respone, it's really helped x

stacieann1989 Sometimes the symptoms of Antiphospholipid syndrome can be confused with MS. I have both. The leg problem may be spasticity. I describe mine as a rubber band stretching and then loosening. I have meds for mine. Riding a stationary bike or just stretching my leg out and pointing my toe down and up also helps.

I'm so sorry you are dealing with so many illnesses. My prayers are with you.

stacieann1989
stacieann1989 in reply to Iona60

Sorry you're dealing with these symptoms too. It's all so confusing, isn't it? Especially when so many of these illnesses have the same symptoms! Thanks for replying x

Iona60
Iona60 in reply to stacieann1989

stacieann1989 If you do have MS, the DMT and meds you will get may help your other symptoms. It did mine.

greaterexp
greaterexpCommunityAmbassador

stacieann1989,

I pray you get answers soon and that you don't have MS. It isn't always an easy disease to diagnose, but each test you have can rule out or narrow the possibilities.

Please do keep us posted about what you find out. We will all be cheering for you as you go through this process. This is a great place to ask questions and find support.

Thank you so much for your positive respone. You've made me smile today :)

The determining is hard not to look up and google every disease and my symptoms.I wound up depressed and sometimes right sometimes not.Than as symptoms came up again but different it drove, drives me nuts.We want answers and we want ways to feel better, to deal to cope or in the face of some diseases, to die gracefully or not at all...Don't be afraid to tell a doctor what you believe in your heart and also be able to say no or yes to something that effects you and your body.My diagnoses has changed into less of some more of another......life..that is what it is...best wishes and good to have you aboard...

💜 thank you so much for your reply. What you have said is very true. Thanks for the advice xx

I hope you do not have MS.

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