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Topic: I’m terrified that I have MS

  1. Johnny_
    Johnny_ avatar
    28 posts
    27 December 2019 in reply to that guy

    Heya That guy,

    It’s great to hear from you and to hear that you are doing well too!

    You wouldn’t believe it, but reading your post is almost like reading my own story, accept the running part, I’m more of a weights person and I’m 10 years older lol.

    My symptoms are like yours and have reduced these last few days, just the fatigue still lingering, everything else like you has backed off a lot too.

    I’m able to go for a walk, do some shopping and do basic things around home but that’s about it, oh and a little yoga today too(first time).

    If you are worried about it coming back, it can if you push too much. Just look out for the symptoms and take a 5 min break if you need too so you dont relapse but it sounds like you are going strong and you have family around you to help.

    im keeping a record too, and have found it interesting when looking back at it, especially when I relapsed, it helped with my recovery.

    I appreciate the kind words. like you, I’m getting there slowly and improving a little every couple of days, take care and here to chat anytime:)

  2. that guy
    that guy avatar
    25 posts
    30 December 2019 in reply to Johnny_

    Hey Johnny, I just wanted to ask you something, do your symptoms get worse during the night?

    i find that on some nights my symptoms tend to buildup a bit and tend to be at the worse between 10 to about midnight, I’ve had some sleepless nights due to this, and they also seem to follow after I get a funny feeling in the back of my head.

    still have the symptoms, although today hasn’t been too bad, going for another job tomorrow, weather permitting, although another new symptom has come up, I’m getting this feeling in my sinuses area that feels numb, but it actually is not? It feels strange, but it only lasts about 5 seconds at a time, that’s pretty much the same with my other symptoms (except for the fatigue which is also slowly disappearing)

    im thinking should I head back to my GP, but blood tests have ruled out a lot of things including thyroid and autoimmune, so it would be worthless, or should I get a second opinion.

    i had a coffee with my mum yesterday and she also seems to think that it’s a reaction to the glandular fever or at least the virus to it

  3. Johnny_
    Johnny_ avatar
    28 posts
    1 January 2020 in reply to that guy

    Hey That guy,

    Happy New Year....you will get through this!

    Yes! My symptoms appear to get worse when I’m tired so generally after 8pm and first thing in the morning too when I wake up.

    I have noticed if I sleep well my symptoms are either not there or I can barely feel them but sleep affects them.

    I had acupuncture recently which has helped and was given some anxiety/sleep herbs which have helped. Maybe this might help you?

    I had bloods and another ecg done and again everything is normal. GP is happy with my progress but says sleep is very important and consistent good sleep will make a difference.

    I think it’s a good idea to check in with your GP regularly for tips and tricks or just for the reassurance your doing all you can. I’ve done those tests too and came back all good. A second opinion is good if your constantly thinking about it, relaxes the mind.

    Currently I get a light tension head ache across my forehead, light tingling on my forearms, light tremors in my legs and arms and the fatigue is easing off.

    i go to bed at 10pm at the moment and will move that to about 9pm as I have broken sleep from about 2am.

    My acupuncture guy was saying glandular fever puts a lot of stress on the body so quality sleep is really important and if our bodies don’t get that the body will stress more as it gets fatigued.

    keep in mind, glandular fever can be bought on by stress too..very common for yr12 students to get it so eliminate any stress around you if you can.

    how are you sleeping? maybe try going to bed a bit earlier? This has helped me.

    Let me know how you go. I hope this helps you :)

  4. Samfromwa
    Samfromwa avatar
    17 posts
    3 January 2020 in reply to that guy
    I had the same type of symptoms, no glandular fever. I beleive its anxiety related. When I first wrote to you my symptoms were so chronic and so constant and alarming. Now I have days were I'm symptom free, 3 months later. It's anxiety. Honestly. If you're not convinced do what I did. Go to a gp, get a referall to see a neurologist. He will do a mri of brain and spine, they bulk bill it at the neuro. My results came up clear. I then was prescribed panic, anxiety medication. I cannot tell you what medication as beyondblue do not permit us to share what medications we use. It has given me the best sleep and more energy and 90% less symptoms now. Anxiety can cause overwhelming sensory issues, there is no doubt it. Make sure you eat enough and on time, avoid coffee, I can't stress that enough, avoid it. Breathe, block out the thoughts as hard as you possibly can. Fight those thoughts like you've never fought before. Also never refer to Google ever again for medical advice. I feel so much better, in a few months I'll stop the medication and see how things go but through the guidance and monitor of my doctor.
    1 person found this helpful
  5. that guy
    that guy avatar
    25 posts
    7 January 2020 in reply to Samfromwa
    Hi Johnny and Samfromwa

    So a bit of an update, it seems like every passing day is unique, one day i will have more symptoms, and the next I don't feel anything at all, its weird, and a little frustrating, but it hasn't been too bad, I think in the past month, I've only had one day where I struggled to get out of bed because of the symptoms

    I'm going back to my psychologist on Thursday and will take things from there, I'm also looking at making another appointment with my doctor to look at going back on medication or at least getting an MRI, one thing is for sure, I cannot keep on going like this and that I need to do something.

    Past few nights I have not been sleeping well, seemingly for no reason, yesterday I returned to work and it was a bit stressful, so the symptoms came back a bit, but I was calm by the time I got home, however since I was so tired, I went to bed early, about 10 o'clock, and I must've slept as soon as my head hit the pillow, because next thing I knew, I woke up this morning fully awake and refreshed. Its amazing how different we can feel from one day to another.

    Also Johnny I'm part of some anxiety groups, and the symptoms you and I have, seem to be VERY common among anxiety sufferers, so hopeful that will help reassure you!
  6. Johnny_
    Johnny_ avatar
    28 posts
    16 January 2020 in reply to that guy

    Hi that guy and samfromwa,

    im glad to hear that you are making some progress. I know how hard it is but even the smallest improvements will keep you positive.

    when you do your mri I’m curious on how you go, fingers crossed you get some answers.

    if you struggle to sleep, ask the chemist for something to help. I have and they gave me something but advised to just use it to get back into a sleeping pattern and not every night. I’ve done this and it helps to keep my symptoms stable.

    another tip is to spread your meals out too and eat healthy, I’ve noticed this has helped me a lot too.

    i have thought it might be anxiety as like you said the symptoms are very similar, so has my dr, but I don’t think that’s what I have unless it’s in my subconscious. I’ve had normal anxiety responses a couple of times over the last few weeks and it’s different to my other symptoms, so weird. If I lay still I honestly feel fine but if I move around it’s like my muscles are too week to lift myself and shake, not always but a fair bit and it’s only very lightly too. I will be seeing my dr again as well as my pscyh and see how I go.

    Keep going forward mate, you will get thought it!

  7. that guy
    that guy avatar
    25 posts
    20 January 2020 in reply to Johnny_
    Gday Johnny

    Apologies for the delay in replying, I've been trying to keep myself busy as I find it helps.

    As you may have seen on the symptoms thread, I am now on medication, this decision was reached between me and my doctor after thinking about it for a few weeks, I was a little bit hesitant to go back on them, as I was worried that people may judge me, but My doctor says that I shouldn't have to be, and that it happens more then I think. I'm only a week into them, and dealing with a few side effects, but she says that I need to give it a couple of weeks at least before they wear off.

    How have you been feeling? My doctor says that these symptoms could last for another 3 months, or possible longer, Post viral glandular fever sucks. Even though she says this, I'm still worried though. I try to keep busy and all that, but it can only help so much. Sleeping hasn't been too bad, though Friday night, I had a case of the Chills and they kept me up.

    I've also been trying to cut back on Caffeine, but that's easier said than done, as I've been drinking it since I was 15
  8. Cait1234
    Cait1234 avatar
    1 posts
    21 January 2020 in reply to that guy

    Hi there,

    I’m so relieved to find this post as I’ve been having a panic attack about this exact same fear for about two hours now.

    It all started yesterday with a growing concern about a sore foot and Pins and needles in said foot. I put this down to being hungover (my anxiety goes through the roof when I’m hungover for obvious reasons). I woke up today without any pins and needles and so I was very pleased, however tonight I’ve gone to bed and now have pins and needles all over my body!

    I just wanted to say thank you for sharing because reading this has really helped remind me that this could be a symptom of anxiety and me over thinking. I did the same thing and googled it only to have MS come up as a result.

    I’m hoping the symptoms I’m feeling are just a result of my anxiety and will die down when I start managing it a bit better (not drinking alcohol, back into a routine, silly season has really gotten the better of me).

    Your stories have given me hope and have certainly calmed me down. I plan on seeing my GP if I continue getting these symptoms regularly, but for now I can hopefully get some sleep and relax.

    thanks again, I was so relieved to find that so many others had the same fear as me, there’s comfort in that- makes me feel a bit more sane.

  9. Johnny_
    Johnny_ avatar
    28 posts
    23 January 2020 in reply to that guy

    Hey that guy,

    No apology required mate, you must do what need to get through this difficult time.

    That must have been a tuff decision but sounds like it’s the right one. I can only suggest to stay in contact with your dr about how your feeling while on medication to ensure it’s working for you.

    Try not to worry what others think too, I know it’s easier said then done but they aren’t walking in your shoes so try not to worry, I know I don’t and I’ve found my true friends have been very supportive. Since all of this, I am looking at life very differently.

    I’m honestly feeling the best I have since all this started. In the last 4/5 days my symptoms have really settled, with only the occasional tension headache here and there. Everything else has pretty much gone and my energy/strength is returning. I have a bit to go but I’m on the mend. I am sticking to my routine to the clock and eat very clean as well as staying on top of my sleep and meditating everyday.

    I can understand your worries about post viral fatigue but trust your dr, I have and she’s been right the whole time. Make sure you don’t ware yourself out too, your a bit like me in that way of keeping busy.

    Meditation has helped me heaps to slow the mind and not always trying to keep busy. I never thought I’d practice meditation but it’s helped me a lot! I use to lay on the floor to meditate as I couldn’t sit up for long but when my mind went clear for a bit it felt like I sunk into the floor..it’s amazing so worth a try as I think it will help your worries and settle your mind.

    Yes, coffee is hard to stop drinking, I love it too. I stopped drinking the early morning coffee as my body didn’t want it. I still don’t have one till after 11am, weird i know but it’s helped.

    I think your doing very well so keep it up, one day at a time mate.

  10. that guy
    that guy avatar
    25 posts
    27 January 2020 in reply to Johnny_

    Hey Johnny

    im glad to hear that your doing better, I can’t say the same for myself unfortuently

    i was doing fine until about Friday. The burning feeling came back in my legs, arms and ears, and I had some chest and back pain that lasted about half an hour, and has been on and off since. also the headaches have come back and my head feels tight just above my ears. The fatigue however has been improving

    im getting really scared now, as it’s been almost 3 months since I was diagnosed with Glandular fever and over 5 months since these symptoms started happening. I honestly don’t know what to do, my brain is thinking every possibility out there and I hate it. Even my Video games which have helped me for so long, only work at the best of times now.

    i have to go back to my GP in a fortnight about the medication, I havnt found a lot of relief yet from the medication, though it’s only been two weeks.

    the longer these symptoms goes on, the more scared I’m feeling

  11. Johnny_
    Johnny_ avatar
    28 posts
    30 January 2020 in reply to that guy

    Hey that guy,

    I appreciate the words however I’m in the same boat as you, I started sliding backwards on Saturday with just the fatigue, possibly due to the heat as it’s been shocking and was hit hard on the Monday where the tremors, tight chest, tight throat, burning forehead and being emotional came back too.

    Today, it’s all still there but the severity is far less. My dr feels it’s due to the heat, lack of sleep as it’s been hot and it’s just part of the cycle of my body trying to get back to normal. When I look at my diary, it actually shows this too...it cycles around every 4 weeksish, each time I get a lot better before the crash.

    im sorry your feeling scared and that my reply is a bit late too, I hope today your doing a little better.

    Just remember, glandular fever is anywhere from 3-12months, it’s different for everyone. I’ve personally spoken too 5 people who had it. They hated it too lol. None of their stories were the same and all of them mentioned symptoms that we have both experienced. I feel because my body is fatigued from fighting this for so long that maybe my anxiety is far worse then normal during the hard days.

    on the medication, my go said anxiety medication takes 2-6weeks to fully kick in. I asked about meds today and my dr wants to hold off another week so I am unless I go backwards again.

    Have you tried meditation or anything as yet? does it help? I only ask as it’s helped me a lot through this time. In fact, it’s something I rather enjoy now and will continue to use it even once I’m better.

    I know how tuff this is mate, keep your support close and don’t just talk about this crap either, talk about positive things with people around you too, it lifts you up. Take care mate, always here :)

  12. Johnny_
    Johnny_ avatar
    28 posts
    1 February 2020 in reply to that guy

    Hey that guy,

    I hope your doing well. Thought I’d pass this little bit of info onto yourself.

    A friend of mine put me onto this website called earthclinic. It’s about natural remedies for various illnesses that people have used successfully, it’s quite interesting.

    Anyways, look up “mono” and you’ll find glandular fever stories, mostly for teens though.

    The main thing I read is lots of people were taking lots of vitamin C and cold pressed coconut oil. I checked with my dr who said it’s ok to try those kind of quantities. I Started today so I’ll let you know how I go in time.

    stay strong:)

  13. that guy
    that guy avatar
    25 posts
    1 February 2020 in reply to Johnny_

    Hey Johnny

    ill defiently look it up, I’ve been a little weary about natural remedies though in the past, so I’ll see how it goes.

    well I can add Nausea and headaches to the list of symptoms. Started feeling nauseous last weekend thought it cones and goes. But the headaches, oh god, this one I’m having has been the worst yet.

    its been mainly my right side above my eye, but it’s been all over my head, it’s been going on since Wednesday, and while it’s not bad and debilitating, it’s defiantly been my worst yet ibuprofen has been helpful with them though, but man that scared me when it woke me up in the middle of the night.

    Defiently going to discuss that with my doc

  14. 44Max44
    44Max44 avatar
    136 posts
    2 February 2020 in reply to that guy
    Hey mate, sorry you're feeling this way.

    As you can see from my 100 posts, all of which are related to health anxiety in some way, I'm no stranger to health anxiety. In my experience, there is no limit to what your brain can and can't trick you into feeling, I have experienced probably every symptom in the book including all of the ones you've mentioned and not even once has one of them ended up actually being something... it's weird not being able to trust the sensations you're feeling...

    One thing I have noticed, though, is that when I think something is wrong with me, lowe & behold, that thing I think is wrong with me will start producing symptoms.
    For example, I can be experiencing no symptoms whatsoever, then all of a sudden a thought pops into my mind or something I see gets me thinking about a possible health problem I could have (for this example let's say stomach problems), and then lowe & behold I start to experience symptoms related to whatever health problem I'm worried about.
    This happens 100% of the time with me. I've even tested my theory by trying to trick myself into thinking I have 'X' just to see if symptoms related to 'X' start appearing afterward, and they do. Even right now just mentioning stomach problems has made me start to experience stomach-related symptoms.

    I'd really recommend The Anxiety Guy on YouTube. He helped me through a lot of tough spots when I was suffering from Health Anxiety really bad last year. After using some of his techniques, I've recovered quite a lot and don't experience Health Anxiety nearly as bad or as often.



    If you want to go to the doctor, go. I went probably 20-30 times within a couple of months for minor issues that I thought were life-threatening at the time (because of health anxiety), and the doctors were always happy to help and understanding of what I was going through. There's no harm in getting something you're worried about checked out, even if it ends up being nothing.


    I hope any of this helps. :)

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