A&E again...massive MS fears. [Archive]

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DaisyP

20-01-15, 00:57

So on Friday night I developed numbness down the right side of my body, it lasted around 3-4 hours, and followed a migraine - which started as pain in my left eye 5 days prior to that. The Dr said it was migraine related and that it should settle.

Saturday and Sunday I slept all day and rested and the migraine let up a bit but tonight I've had blurred vision in my left eye - lasted 5 minutes or so and the tingling has come back - in the same side as before but in different places down the leg and foot. The Dr said he wants me to be referred to a neurologist, he said he thinks it's migraines but wants to rule anything out. I asked him if he was looking for MS - my main fear, and he said he didn't think so but can see why I've drawn that conclusion.

He isn't concerned because I had a clean MRI 9 months ago with the same symptoms and nothing showed up. I have also had various other neurological exams since then, all showing no glaringly obvious symptoms. But tonight I feel dreadful, I'm 30 next week and have lovely things planned for it but can't get excited for this fear of being diagnosed with MS. Tonight lying in bed I'm going dizzy and my toes keep getting pins and needles and going numb.

I'm so very scared. I am starting to lose the plot. I have absolutely convinced myself ive got MS, between all the twitching and muscle contracting happening whilst in bed and the weird vertigo type feelings I just cannot sleep for fear of waking up and not being able to walk. I'm so very scared.

AthenaFaeyrn

20-01-15, 04:34

Your post reminds me so, so much of what I was going through a couple of years ago...

I was 100% convinced that I had MS, I had zero doubt about it. I had an absolutely huge list of symptoms all that seemed (to me), to "logically" point to MS. I had exactly the same as you, including blurred vision, tingling down one side, pins and needles in my hands and feet, vertigo, dizziness, numbness, muscle twitching and contracting... I would feel numbness in the left side of my face, my thighs, my muscles felt slack, I also had this "zombified" feeling whereby I felt like no thought at all was going through my head, as though I was in this vegetating mental state that put the fear of God into me as I couldn't for the life of me shake it off. It was like I could just stare blankly head with no thought passing through my mind. I would wake up feeling like a zombie (not in the usual sense of just having woken up but something very frightening, like I wasn't really "there"), I would also need to concentrate even to walk down the stairs as my coordination was off and sometimes I would trip or lose my balance on the first step because I put the wrong foot forward or something. I came close to accidentally urinating which made me convinced that I was losing control of my body and mind... So, so many MS-like symptoms.

I would also "practice" handwriting or drawing or playing guitar, just to "check" that I wasn't losing my ability to move my hands or coordination. I was convinced I wouldn't be able to do these hobbies for very long because "my MS" would gradually get worse and mean I couldn't do these things anymore.

Like you I went to A&E, it was one of the scariest times of my life, and then I had to wait a while for a brain and spine MRI and to be checked over by a neuro. Everything came back absolutely fine and the neurologist I saw prescribed me medication for anxiety (admittedly that I didn't take because I am scared of meds! agh).

Sometimes I still get similar things, but never as bad, and it's assured me that it wasn't MS, but very likely my anxiety. It took me a long time to accept it completely, but I ended up doing it.

I have noticed that with me, I am seriously susceptible to "getting" symptoms, based on how much I read on Google about particular illnesses. I find myself getting more, and whilst they are very real, I can never seem to differentiate between what is anxiety and what is the actual condition I fear having.

I am now sure that all of those symptoms were my HA and general anxiety, but it can quickly snowball into conviction, and an even more extreme set of symptoms that will solidify my conviction (and thus, anxiety), even more.. It's like a vicious cycle that slowly gets more extreme.

Anxiety can not only pack your body and mind with all of these symptoms of anxiety itself, but also reading up about the condition you fear you have, can actually give you those symptoms, based on the anxiety you feel reading about them, and feel convinced that you have it. <3 I hope you are feeling a little better. I hope you will report back and tell us how you're getting along. We're all here for you, all of us in this same boat. x

---
Ooh, also.. I felt like this might be a little relevant.. Like you, my MS fear, and the extremity of it, struck at a similar time to you - you have a big event coming up, and lots of incredible things planned.. I was getting ready to move out of my parents for the very first time, and into an apartment a very, very long way away from my parents, to live with my boyfriend and his brother. It seems strange (and horrible!) that these things can seem to strike when we feel like we are on the edge of something big. I feel like there might be some sort of link there somehow. Like we have this impending fear that something terrible is going to come crashing down on us in our lives at every happy turn.

DaisyP

20-01-15, 07:46

AthenaFaeyrn

20-01-15, 07:59

Hi Athena

Thank you for your very thoughtful reply on this. Your story has made me feel better as last night I had 100% convinced myself that I have MS and was even to the point of thinning about myself in a wheelchair :-( Awful.

I think what scares me so much is that I had similar symptoms last year which set this off and because its gone and come back ive convinced myself that it's the relapse/remitting type of MS. I saw a neuro last year who said I wasnt showing any symptoms at all which follow the typical MS pattern. What I don't get is how do they know that?! I know it's their job but I am displaying MS symptoms?! It's bizarre.

Today I've woken up and my head is not heavy and my migraine has gone, and so has most of the numbness too which reassures me as I'm pretty sure if that nerve was damaged then it wouldn't heal up overnight?

I get that feeling too of not being 'with it'. I feel detached from everything but what reassures me is that I'm currently studying and finding no problems with taking in new learning - and I know problems with the brain are one of the first signs.

As you can see, I go back and forth with convincing myself I have it and convincing myself I dont.

Did your vision blur and then come back after a few minutes? That's what mine does...

Thank you so much for your reply x

Hi again Daisy! :hugs:

Oh gosh I went through those same motions of imagining myself wheelchair-bound, I know exactly how you feel. Or I pictured walking with a cane, then wheelchair, then struggling to feed myself, needing help for everything. I feel your pain with this completely; it is absolutely overwhelming and terrifying.

Also YES with the relapse-remitting thing! There was actually a point in my MS fear in which I had actually HOPED it was relapse-remitting, as I remember trying to pull out whatever shred of hope I could that I might get a little "better" before I got worse, and hoped my condition would not decline dramatically. Or I hoped that it might be the kind that you only get one "phase" of it, and then it goes away for years, or just never comes back. I was constantly racking my brains, trying to scramble together memories in my past of anything I'd had like this before that might point to this being relapse-remitting MS, like symptoms that were similar but lighter, or just symptoms of very, very early MS.

I also had horrible migraines and headaches, and I'd cross-analyse it from every which-way - if it's on a particular side of my head, and compare my pains to those described by actual MS sufferers whose experiences with it I'd Googled and obsessed over.

My vision did blur and then come back! Sometimes in just my left eye, and sometimes it still does, or blur slightly at the "edges" of my vision, and then come back. But I feel sure at least now that this is my anxiety, poor sleeping habits, my poor self-care or even dehydration... Stress can really manifest in ways that might not seem instantly obvious. It's like when I get panic attacks, in my mind, at that time, I think I'm having a stroke, but really it is just pure panic.

Sorry for rambling so much to you! Your experience just really struck with me and I hope with all my heart that you will start to feel more reassured soon. <3 Worrying about MS, or any illness like this, is something I wouldn't wish on my worst enemy.

DaisyP

20-01-15, 08:43

You aren't rambling at all and your replies are really helping, thank you.

The blurring vision is weird, I couldn't read text for a good 5 minutes.

I think what has scared me so much is the Dr In a&e saying that he wants me to be referred to a neurologist. I will see what my Dr says when I see her Thursday, I trust her and what she says.

My migraines have been so bad and I clearly remember last time someone saying 'do you get headaches?' When trying to find cause of problem, and ruling out Ms.

The feelings are just awful. I do feel better today but wonder how long it will last. Everythjng always seems worse at 1am! I am just so terrified of it being Ms, I'm so scared just all the time!

Sluggy

20-01-15, 20:49

In terms of MS itself, quite a lot of people live a relatively independent life. It is by no means a death sentence or being confined to a wheelchair for the rest of your life. I'm currently in a difficult bout of health anxiety with MND (ALS) I'm currently convinced I've got it. I feel my speech is slurred, I think my tongue is smaller than it was last week, I'm having swallowing problems and tonnes of fasciculations mainly in my legs and tongue. I've got bloods next week and I'm praying the answer lies there, because right now I'm 90% sure I've got a couple of years maximum left.

Enough about me, all the best to you. I've had tingling in my arms and hands before, and on numerous occasions get blurred vision in one eye when I wake up. 4 months ago I lost vision in my left eye and was terrified of MS, but after a retinal scan, it was just a migraine.

All the best to you, and hope you get through this :)

Serenity1990

21-01-15, 00:49

Daisy, we've been here before, you didn't have MS then.

When I first googled my synptoms (and decided back then I had heart failure, lol) a few hours later my entire right hand side went weak, my face was drooping slightly on the right, I had the most incredible chills and neck pain. I was eating with my parents at the time and my mum called an ambulance, and one was here within minutes. The ambulance crew were originally worried, but after a few strength tests etc. they were less so. Nonetheless because of my symptoms they said certain things needed to be ruled out, so off I went with blues and twos to hospital.

At hospital I was seen by a junior doctor. He said my symptoms were consistent with a TIA, but his examinations showed no indication of this and so he wanted a specialist to see me. Luckily for me (not so luckily for some other poor sod) someone else had had a stroke in the department so a stroke specialist happened to be on hand. She took everything really seriously, did a load of exams, blood tests, urine test, everything else. She came back and said I had definitely not had a TIA or anything else. I was terrified, I had no history of anxiety at that point and couldn't believe - given my extreme symptoms - that nothing serious was wrong. The best explanations she could give was hemiplegic migraine, but given the lack of a headache and no history of migraine she wasn't entirely sure of this, she said anxiety could well be playing a big part. She said she'd send me for an MRI just to reassure me, and off home I went. Right as rain (if a little shaken) I might add. The junior doc said if anything similar happened I should still come back.

This was the point my googling habit started. Brain tumour was the obsession back then. The same thing happened a few days later and I got someone to drive me to hospital (I wasn't going to waste another ambulance's time, given what they thought it was). The doc did a load of tests and again, nothing. I asked the doctor straight: is it possible I have a brain tumour? He said he didn't think it was at all likely, but he imagined that's why the MRI was ordered.

So from then on in I had a three week wait in full belief I had a brain tumour. I googled the synotoms and even started to develop them: I was throwing up my breakfast in the mornings, and all sorts of other stuff I don't care to remember now. I had the scan and had another week wait for the news. The entire four weeks I barely got out of bed. It felt like a year. No, make that ten.

Of course, as you know it was normal.

Now I won't bother with the rest of my story. As you know, I went through the whole MS thing, and have had a multitude of worrisome neuro symptoms that continue to this day.

Let me tell you two things though. Firstly what you describe, specifically numb down one side, is very commonly known to happen when people pass their stress threshold. It happened to Carol Vordaman when she lost her Countdown contract, it's happened to a good few people on here, and it was the beginning of the journey of a good few people on the BFS site.

Secondly, MS symtoms DO NOT COME AND GO! They come, linger, and go in a few weeks or months. If you had a lesion in your brain that lesion would take a bloody long time to repair. If one side of your body went numb due to that it would stay numb. If your optic nerve was inflamed you wouldn't have only had blurred vision for a few minutes, it would be like that for weeks without fluctuating, or more likely you would lose your sight for that period. MS is a very variable disease, but it is not capable of coming and going within a matter of hours. You've had a clear MRI, you have no lesions, so no MS. Yeah you can throw that 95% figure at me if you like, but almost all of that 5% have the form of the disease that appears in later life and the symptoms don't come and go at all. Ever.

I'm not a doctor, but your doctors have told you the same stuff in the past. I know this because you've said so previously!

Once you pass your stress threshold you've (metaphorically) fried your nervous system. It will do crap like this. You'll tingle. You'll twitch. You'll go numb. You'll have fleeting sensations that you forget about, you'll have horrible ones that linger. And this will happen for a long time. I read somewhere that in this situation it takes on average seven times as long for your nervous system to recover from this as it did for you to do the damage. The sensations aren't in your head, they're due to real albeit reversible damage you've done from months or years of putting your body through stress it wasn't designed to go through. I'm in my early twenties, my CV reads like that of a very successful 35 year old, and that happened through working hundred hour weeks, all-nighters studying, pro plus, and stressing myself to the point of no return. When I had the odd day off (once a month, if that) I used to wake up naturally and immediately panic that I've overslept and should be somewhere. Am I surprised I've fried my nervous system? In hindsight, no.

That's why I think the BFS diagnosis was so important to me. Firstly it explains all of my symptoms, and was confirmed with a positive test. But secondly look at the forum: it's filled with two types of people: chronic anxiety sufferers who have fried their nervous systems with anxiety, and high-flyers who have burned themselves out over years. The worst thing about these symptoms is almost everyone googles them, that's what we do these days after all, and because they're pretty much the same list as some pretty nasty stuff we panic ourselves even more.

I apologise to anyone who find any of my comments above inappropriate. I'm not trying to dish out medical advice as I'm not even vaguely qualified to do so. However I went through months of this MS panic hell, and because I couldn't un-read the crap I'd read about the disease it was largely educating myself in why the docs can tell the difference that I was able to make the transition to beginning to live my life again.

Magic

21-01-15, 13:38

Serenity, I agree with everything you have said.
The paragraph that starts "MS symptoms do not come and go" is explained
so well.

AthenaFaeyrn

21-01-15, 15:39

Excellent post Serenity!!

DaisyP

21-01-15, 21:07

Serenity - excellent well thought out reply. I am going to reply to this properly tomorrow as Im in a full blown migraine attack and can hardly look at the screen but I wanted to say thank you so much.

Be back tomorrow :-)

Serenity1990

21-01-15, 21:38

Nothing I write is well thought-out at 1am! :roflmao:

susie1

21-01-15, 21:43

What a brilliant post. You have succinctly put what we all know. HA can wreck your body and produce a multitude of physical symptoms that simple justify your erroneous fears in the first place and cause the vicious circle to start all over again.It gets you to the point where you simply cannot believe that these symptoms are due to MS/ALS/cancer - whatever the ultimate fear is. Why is it so hard for us to realise that anxiety is the most frightening and life threatening illness we are suffering from.

Please try and trust the GP's and the previous tests. You need to enjoy your birthday celebrations. Don't let HA rob you of it

DaisyP

22-01-15, 16:10

Hi all,

Sluggy - i hope you are starting to feel better now?

Serenity - thank you for the post, it has really helped me rationalise it a little bit more. I have been referred urgently to the neurologist - the same one i saw last year, not because the Dr. thinks there is anything to worry about but because the migraines I am having are quite unbearable and saw me turn up to the drs in floods of tears.

The fact that MS doesn't come and go is what i am fixated on to make myself feel better. My toe was numb last night but not throughout the day, it went overnight and has just come back so I am reassured by that a little bit as i know that shouldn't happen. Then my leg will tingle in a patch and then that will go again and i am not suffering any clinical weakness - even though i feel weak, if that makes sense? I've had three neurological exams in the last week and all results were perfect, surely i wouldn't have passed those either? I think the headaches are worrying me as i read that that is a symptom of the beginnings of MS too :(

I totally get what you are saying Serenity about the panic when you have a day off. Even today - even though I am really feeling quite poorly, it is taking me a lot to actually tell myself to sit and relax and not do anything. I get feelings of guilt for doing nothing - isn't that stupid? I am ill and i am trying to get rid of this migraine, which is perfectly acceptable yet my brain keeps saying 'you have this to do and that to do and shouldn't be sitting doing nothing'. And then i get panicky. Maybe i have reached my stress threshold.

Did you get headaches in the back of your neck which made you feel sick and dizzy? Thats the worst symptom i have right now. It's really weird this health anxiety because i can rationalise most things - like yesterday one of my friends said 'oh dear, you do need that seeing to as my friend had those symptoms and she had a brain tumour' - i know she never meant it to scare me and she probably doesn't think like i do but that scared me but i hadn't even thought about that before! A brain tumour wouldn't have even crossed my mind at all but now it's in there and i am thinking about it - although i know it's really unlikely.

The MS thing terrifies me and it scares me how your body can produce so many symptoms which aren't some horrific neurological disease! I find it hard to believe it's anxiety in some ways!

Serenity1990

22-01-15, 20:03

I empathise entirely. I'm having a bit of a relapse into the worrying right now, trying to rationalise is difficult without objectivity.

Toronto girl

16-02-15, 00:28

Serenity I just read what you posted a while ago and it is good. I am suffering from neurologicsl symptoms that have NO explanation and they are freaking me out totally. Thank you.

DaisyP

16-02-15, 06:15

Serenity does help a lot :-)

Serenity, apologies, just seen this post which you posted a while back, hope you're ok now