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Can MS symptoms be subtle?

Hi everyone!

I’ll try to keep this short, and will appreciate any insights.

I’m 38 and I’ve had an undereye myokmia (twitch) 3 months since Sept when i was referred for a brain MRI, (clear). The referral scared me and I started to Google on eye twitch and MS (among others) came up the list, I started to feel tingling on my legs and hands, dizziness on and off throughout the day during this period. I was panicking daily. Blood tests for nutritional deficiencies were normal, NCS showed bilateral carpal tunnel syndrome. Fast forward to now, I just found out I’m pregnant, and I’m having a medley of symptoms that’s terrifying me and im feeling so helpless because I’m pregnant and cannot be medicated Nor further tested. My neurologist is an MS specialist, and has prescribed Clonazepam for anxiety disorder. My last visit was last week when I noticed my other eye twitching and I rushed to see him. He did a taste test and commented that my taste buds aren’t affected, and the twitch has migrated and not equal on both sides, so he still thinks it’s anxiety. He doesn’t say much except that I should concentrate on my pregnancy, and watch my anxiety levels. He doesn’t think it’s MS because of my clear MRI 1.5months ago.

if anyone could give their opinion on my symptoms, because they don’t exactly fit in an actual textbook MS symptom description but Dr Google seems to say anything is possible…

  • prolonged under eye twitching

  • lightheadedness throughout the day but mostly after meals. I’m on proton pump inhibitors so I don’t know if that makes it worse. But I had this before my pregnancy. It’s been 3 months

  • random muscle twitches on calves, thighs, soles, back, it’s been 1.5 months

  • muscle tightness mostly in calves (1.5months)

  • painful knee joint which feels like something is dislodged in there (2 weeks)

  • occasional headache which makes the back of the eye hurt (doesn’t last more than a day, no blindness or blurry)

  • tired throughout the day (more so after being pregnant)

  • tingling and prickling or more like fuzzy feelings on hands, calves, feet (1.5 months)

  • could anything have changed in 1.5 months after a clear MRI?

I haven’t felt myself in 4 months, terribly worried and frustrated that I’m pregnant and if I really do hve MS, I can’t treat it. Please help! Thanks!!

hello asian mom

please stop consulting doctor google. he is a notorious quack!

that is probably where your anxiety came from.

you are on the books of a neurologist, so you’re in the system.

see your GP for any troublesome symptoms.

look after yourself and your precious bump, your other children too.

after your baby is born, perhaps you could see the neuro again.

carole x

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Hello

I have little to add to what Carole has said except

  • your neurologist is an MS specialist
  • s/he will have done a physical exam
  • together with your clear MRI s/he has said it’s not MS
  • it’s probably not possible to have symptoms, a clear MRI, then develop lesions on the brain within a short time
  • Dr Google would be struck off were he a real doctor.

You don’t have MS.

Now, concentrate on your pregnancy, you other children and rejoice that you don’t have MS.

And give Dr Google a miss.

Sue

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Hi Asian mom,

I also have the twitching eye but mine is upper eyelid. I’ve had it for over 4 months now. It was a comment from someone else that made me think MS and like you I consulted Dr Google. I tend to find that I read additional symptoms and then start having them. I also get the fuzzy feelings in one arm and one leg and foot. Both of these are on the opposite side to my twitchy eye. I’ve also started to notice very small twitches in random places but if I wasn’t sp paranoid I’m not sure I would even notice them. I just seem to be overly aware of everything my body does now.

I’ve been told that this isn’t how MS would normally present itself but who knows. I am seeing a neurologist in 2 months time. I’ve had a bit of a meltdown and heightened anxiety in the last few weeks due to other things and rising stress levels. I’m coming out the other side of that now. Have a read about the effects anxiety can have, it’s a very powerful thing and I realise it can really play havoc with our bodies.

I have found Dr Google to be very pessimistic and very contradicting so stick to asking questions here now. I know no one has the answers apart from a neurologist but expressing my worries instead of bottling them up helps me loads.

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Thank you catwomancarole58, Ssssue and anonymous for your replies. I know what a quack Dr Google is, except at times where you go “oh that bit does make sense, yeah I’ve been feeling that way…” and it starts all over again. To be honest, I know I’m the anxious sort, these symptoms are in fact really happening, I see and feel the twitches on my calves, butt and back, it’s so scary! I mean if I had an incident of one eye blindness, I’ll know I’m looking out for ON, but what I have is a headache and painful pressure behind my eye; subtle and confusing. My eyelid twitches have mostly been classified as benign, and they are lessening - the left has stopped, the right started 2 weeks back but hardly happening regularly now.

I’ll take your advice to stay away from Dr Google, and keep on this forum instead, I mean it’s still more helpful to speak to real people with real experience. Though at the back of my head I’m still wondering if I could get an MRI done NOW and that would probably put me at ease for the rest of the next 8 months…

Now what’s really nagging at me are some symptoms I have nowhere else to look. My neurologist has either chosen to ignore, or rather focus on other concerns. I’m afraid to go see him in a short notice again, I will know what to expect - anxiety.

  • lightheadedness almost throughout the day. Room doesn’t spin, I wouldn’t say I would stumble over but I definitely get lightheaded.

  • knee pain, it’s like my knee is bruised, and my legs are so tired, and calves so stiff.

  • nagging neck pain and tightness around the throat. Almost feel like I’m strangled when I swallow. I do have GERD and I’m already on PPIs’ for this.

  • tingling and prickling of hands and legs. This has gotten better over the last month, and apparently I was tested for carpal tunnel syndrome so that would explain my hands, but not my legs.

  • I didn’t do a spinal MRI, only a brain MRI with contrast. So I understand if the brain is clear but the spine has lesions, it’s still MS. Judging from my physical symptoms, would it sound consistent with a clear brain MRI?

Im heading for an EMG on Tuesday, and will see the the public hospital neurologist in 2 weeks, and I know this neurologist is t an MS specialist.

I’m sorry if my post made it sound like I thought you were imagining symptoms. I never meant that at all and would never belittle anyones very real concerns. I meant that stress and anxiety can actually cause these symptoms so what you are seeing and feeling is very real. Twitches are very often called nervous or anxious twitches.

I have not had an MRI or even seen a neurologist yet. I was managing my stress very well before the holidays with breathing and relaxing techniques and telling myself, what will be, it’s not going anywhere and I’m wasting months of my life worrying over an outcome that I cannot change.

I came off the rails a little in the last few weeks and anxiety got the better of me and my symptoms got a whole lot worse in that time. I’m a lot better now and hope I have it back under control.

I hope you can find a way to enjoy the next very exciting 8 months in a way that works for you.

To be honest, no one is going to give you another MRI on the NHS. If your last one was less than 2 months ago and clear, there’s not likely to have been any change.

You could go to a private neurologist and pay for an initial appointment, another MRI scan and a follow up appointment, but I suspect you’d not get much change from £1,000 and still be told the same thing. (MRI scans are very expensive!)

Worrying about random symptoms can cause random symptoms. I really don’t think you have MS, and don’t think you should keep on panicking that you do.

Many people find mindfulness meditation to help. Is that something you could look up and give a try?

Sue

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Anon, Sue

no worries, I didn’t think you meant it that way, I knew you understood since you also had The Eye twitch. My Husband thinks I imagine my symptoms but there are those visible to his eye too. With 2 kids, work, a senior dog and a Husband to care for, sometimes it does get crazy at home. I’m also a worry wart and I think I suffer from health anxiety more than I’d like to admit. Usually I convinced Doctors to perform tests for me, only this time round, I had a doctor tell me at first that my eye twitch is stress related and benign; only to call me back a month later to check up on me saying his senior consultant thinks I should go for a scan, that’s how I had my brain scan and Nerve conduction study, and upcoming EMG (Doctors calling up patients proactively almost never happens); now this probably triggered my health anxiety and suddenly I have almost all the strange symptoms mentioned, till now. I trust what you guys think; I haven’t heard of mindful meditation and I’m keen to try, I’ll do anything that would alleviate anxiety.

Hi AsiaMom, The mind is powerful thing. It can make you ill, like when anxiety takes a hold. The good news is that by using willpower you can make your life more peaceful and calmer. This is what mindfulness is. All you have to do is make the decision that this is what you want to achieve. Best Wishes, Anthony

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Thank you Anthony.

Im trying to get my mind under control, I promise I’m trying…

Im just trying to put my head around this whole thing with anxiety, MS symptoms and all the uncertainties. I feel like one can easily fall into depression with all this uncertainties and insecurities.

My knees hurt today, I still can walk but they seem to be popping and hurt when I walk.

That fuzzy feeling down my calf, it’s there. All the time.

My Husband is irritated, he’s sick of hearing me complain. As Long as I have no diagnosis, he concludes I’m imagining things and that I’m overly stressed.

Until the day I get a report, and a convincing one that I definitely have no MS, that I can breathe easy. For now, it’s so shakey because one day it’s ok, and one day I feel like crap. It’s affecting my work, my life, my relationships, and I think unfortunately it’s probably affecting my pregnancy. I keep wondering if I’m being responsible being pregnant at a time like this while wanting to be tested further for a definite answer. I want all the tests, and treatment if any. It’s frustrating enough to wait out, and even more so, when I am pregnant, with such a Long way to go.

Update: did another NCS today. Was supposed to do an EMG but the doctor didn’t. Seems like the results are normal, so we could really be looking at brain or spinal cord nerve diseases.

We sound so similar, not only in symptoms but in how we deal or don’t deal with them.

You sound like you have been very lucky in how quick you had an MRI in the first place. It will have been a 3 month wait just to see a neurologist for myself when I actually get there. If he decides on an MRI it could well be that long again and then another wait for results. You are already further along than I possibly will be by the time your baby arrives. I suppose what I’m trying to say is now you are under your consultant you should be seen quickly at the end of your pregnancy and they are more likely to agree to a scan then as there will have been more time in between both scans.

I am very new to this although I do know and have worked with several people with MS. I also really do understand how it can easily consume you totally while you are so unsure.

My eyelid normally starts before I open my eyes in the morning or that is when I become aware of it so it is in my head before I even get out of bed. It hasn’t helped that I have been off work for a few weeks and have had to take things easy. (nothing to do with this) My mind is such an awful thing when it is left unoccupied. Now I am able to do more I have been making the effort to keep busy, clear wardrobes, the dreaded under the stairs cupboard has been blitzed, anything to keep my mind busy. Having taken back control I now find I can relax without letting it take over. The funny thing is, although my eye still twitches and I think the other one maybe about to join the fun I don’t feel the fuzzy feeling in my arm and legs when I’m busy.

I also read a lot when I was unable to do a lot else. Nothing like losing yourself in a good book.

Someone made a comment that stuck with me on here. What will be, will be. If it is MS it’s not going anywhere and worrying won’t make it disappear or change the outcome, it only takes away the joy to be had right now and gain nothing. You don’t get these 8 months back.

I know it’s not that easy in reality but I have a husband, 2 grown up children and a grandson who are my world. Whatever the outcome of all this I don’t want to look back and think I spent months of my life absorbed in my own problems and was too worried to fully enjoy time with them. I want to be fully involved in their lives especially with how quick children grow, not only half there as my mind is too pre occupied elsewhere.

Maybe you need to see your GP and explain how it affecting you. Have the medication for anxiety helped at all?

I got my MRI because of my eyelid twitch. The initial concern was hemifacial spasms or if any nerve was damaged causing eyelid myokmia, or brain tumour- all these were from a neurosurgeon’s point of view. And when the scan came clear, the neurologist took over, suggesting botox jabs and to watch my anxiety levels. This was the time when I started to notice tingling pins and needles on my calves, feet, hands, forearms. So maybe, my MRI could also have been taken too early. And also that explains why there wasn’t a spinal MRI.

I’m getting better; the eyelid twitches have stopped, my tingling has lessened, hands are not tingling so much because I’ve been wearing a brace, treating them as carpal tunnel syndrome. I’ve got my good and bad days, mostly bad where my legs just feel achy, painful, and just not normal. I know I do not feel 100%, and haven’t since 4.5m ago. I want my life back, but like what you said, if it is MS, it’s just here to stay. Where I am from, MS is very rare; not unheard of, but rare. There are less than a handful of MS specialists, the rest of the neurologists have heard of it, and are very rigid and treat it like a textbook disease.

My work is catching up and I need to wake up and start concentrating on what I’ve been neglecting - connecting with my kids and hubby. Not too easy when hormones are all over the place too. The anti anxiety pills, Clonazepam was prescribed by the neurologist, but after checking with Dr Google (I know… ) it’s not a drug to take during pregnancy. The OB says take the lowest dose, nothing is without risk anyway. It helps some, but can also open another can of worry for baby.

I wish I could convince myself like you said to concentrate on life and what it has to offer. I know, I’ll try. Gotta adopt the good mentality of those here get some positive vibes. Sure seems like I’m not the only one here feeling insecure and uncertain about our fate… now I’m wishing it’s a case of health anxiety, or anxiety disorder.

if your gp could arrange for you to attend mindfulness classes, you will have a new tool for use when everything gets too much.

if she or he can’t get you to a class, try these breathing exercises.

  1. inhale for a count of 4

  2. hold that breath for a count of 6

  3. exhale slowly for a count of 8 (this is better done by blowing the breath out)

in a way it almost becomes a meditation because you are focussed on your breathing.

what with ante-natal classes and learning how to use your breathing during childbirth, you will be so aware of your breathing!

i learned mindfulness meditation for pain relief at my MS Therapy Centre.

so what i think you should do is mindful breathing and concentrate on that baby!!

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I started physiotherapy, and was introduced to mindfulness. I’m practicing while on some light stretches. On another note, I’m heading toward a miscarriage. I can’t be sure, I have a second blood test tomorrow to confirm this. No heartbeat was detected at my last scan. I’m undiagnosed and that’s why I’m learning from here if my symptoms are MS or fibromyalgia. Now I’m just saddened and wondering if my body isn’t able to hold the pregnancy due to my symptoms. I’ve read that MS sort of goes into remission during pregnancy; my symptoms are subtle but never goes away. It’s so tiring to never feel 100%, and to simply live feeling sick somewhere but can’t say exactly where.

I’m so sorry to hear this Asian Mom. I had thought to message you and see how things were. I’ve had a good week where the only symptom was the twitchy eyelid. Today i have a fuzzy leg again but then today is the first day I am not rushing around and have been thinking about it again so I’m not sure if it’s my mind playing tricks again. How far are you with this pregnancy?

I’ve still been on and off with buzzing and twitches but they have gone down in frequency. It’s the calf aches, elbow pains, hand and foot spasms that have been bothering me.

Im supposed to be 7weeks 5 days. I just got a call from the lab that my HCG is dropping and that shows impending miscarriage. OB wants to see me no day probably to discuss a D&C. I am gonna take it that my health just isn’t in the right place for a healthy pregnancy. Oh and that makes me an AsianMomof2…

Hi Asianmom, I just wondered how you were doing?