Been suffering since March 2018...is it too late for a mono diagnosis?

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Hi everyone, this is my first post in this group but I have been reading many of your posts the past months trying to find some relief and hope, so thank you all for sharing so many stories.

I've always had a happy, healthy life, no medical history or surgeries and suddenly right after my 45th birthday end of Feb this year (as a gift) something just hit me and I honestly thought I was dying. All my family was down with a nasty flu in January but we recovered within a week or two. However mid February I noticed my heart pounding every single night but at some points my chest felt like it was vibrating or shaking, very weird. Within two weeks this internal vibrating feeling just spread up my spine and neck and thats when everything started... I woke up with internal tremor, like all my muscles were misfiring, earthquake feeling and I must of had my first ever panic attack. It came together with, dizziness 24/7, shooting pain here and there, joint stiffness, stiff neck, side neck crampy pain, shaky hands, brain fog, patches of numbness on face and body, tingling, burning sensation, brain buzzing, brain zaps,ringing ears,muscle twitching here and there, overall weakness and so many more. I like many here was totally "off". I have seen so many doctors, all tests, MRI, are normal so they all put it down to anxiety and was given anti-anxiety pills which I never took. I new something was attacking me, this was not anxiety and not having a diagnosis ( I still dont) is the worst.

For six months I felt awful..However, in October the 4th neurologist I saw checked my vit b12 level and it was very low so since then I am on a b12 injection treatment that will end in March. It has worked wonders for me, I cannot believe it. Even if this is just a temporary solution Im happy with "temporary", after those horrible six months. My lost energy is back and that "feeling sick" feeling and dizziness is GONE! Unfortunately I'm left with my daily internal vibrating feeling, like an electric toothbrush is running inside me. I get it at night mostly and its there every single morning when I wake up since March this year, but the past two months it seems to be milder,like a purring sensation and I pray that it may be slowly fading away, fingers crossed!

Since no doctor suggested to check for mono, do you thing its too late now, after almost ten months?? Does the test show if it has been activated recently?? because at least I dont have a mono diagnosis in the past... but maybe I did younger and never new it.

Also did or does any of you feel this internal vibrating feeling?? does it ever go away I wonder?? It scares me so much and so many bad thoughts just cross my mind and its so frustrating when doctors just think you're crazy and dont help.In my case I still dont have a diagnosis!!!

Sorry fo the long post, waiting for your stories and just keep in mind that my b12 treatment has helped me to almost get my life back....just wondering if mono is behind all this..... THANK YOU

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  • Posted

    Hi Vicky,

    I called it internal shakiness and it was one of the last symptoms to go. The weird anxiety feeling combined with everything else was miserable, I have recovered but will never forget the awful experience that is mono. I think you only test positive for a short window of time so the Epstein Barr panel is the test to get.

    My doctor tried to put me on anti depressants too, I told her I was sick not depressed. Unless you have had this, you cannot understand what it does. Best of Luck to you, you will recover.

    Craig and others on this site told me the same thing in the darkest of times and it is true.

    This site was more help to me than any of the doctors.

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    • Posted

      Hi Mono-too,

      Thank you so much for sending me your positive mono story. So sorry you went through this, I can totally relate, and I'm so happy you have recovered now and have your life back, you give me so much hope.

      Yes, I call it internal shakiness too, like a machine is slowly running in my body, such a scary feeling not knowing what is going on inside you... Do you recall, after how many months this awful vibrating feeling went away?? Did it slowly fade away or did it suddenly stop?? As it seems, if this mono for me, it may be last symptom too...

      I'll ask to be checked for sure, thank you so much, wishing you and your family a wonderful Christmas!

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  • Posted

    Blood tests can detect if your body is currently fighting ebv or has done so in the past. You won't be able to do much with either result, but could put your mind at Somme kind of ease on why you have suffered so much. From your description, it sounds very much like you've had it and are now suffering from the fatigue stage...which is horrific. Just have to take each day as it comes And try and remain as positive as you can and know that your body is fighting back to full recovery.

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    • Posted

      Thank you so much Dodge81, that's what I need, to put my mind at ease on what has invaded my once healthy body. Its just so frustrating when doctors dont even think about testing for all infections and we seek help on the net. I googled my symptoms and came across this group and thats when I started to connect everything and wonder if this is mono I'm dealing with. Whatever it is you all surely gave me some relief.... Wishing you and your beloved ones a Merry Christmas!

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  • Posted

    Hi Vicky,

    Thanks for sharing your story and so sorry to hear that you've had such a tough year in 2018, really hoping and praying that 2019 can be a much better one it sounds like a real living nightmare that you have been through. Empathising having went through a tough year with mono myself a number of years ago.

    It's certainly worth going to the doctor and asking them to do a test for mono (or EBV virus, the main virus which causes it), as Dodge and Mono say the frustrating thing is that I think it is just in that initial first period of feeling unwell that it tends to show up as positive, although I was quite unwell with it for 10 months before I started to feel a real shift, it was only the first couple of months that the blood test actually showed positive for EBV, even though I still felt unwell for much longer. However, as Dodge says I think they can tell if you've had a past infection of the virus even if it's not currently showing active, so it's definitely worth getting that blood test done for sure.

    Many of the symptoms you describe do sound like mono for sure, for me the main debilitating and ongoing symptoms were horrible low grade fever, fatigue, different aches and pains in different areas / glandular areas at different times and just that feeling of being stunted or 'off' as you say. I can only imagine how tough it must be when you can't get a firm diagnosis, hoping so much the doctors can help with this and offer some reassurance and good advice in this respect.

    Glad to hear that the B12 injections are helping, hopefully it means that a positive change is happening and that your body is starting to recover, be it mono or another similar type virus / illness. For me, when I had mono taking vitamins and supplements helped a lot, a good strong multi-vitamin per day (Immunace Extra available here in the UK was the one I took), a B100 complex vitamin per day (giving the other B vitamins as well as the B12, can really help your energy levels and nervous system), higher doses of Vitamin C (1000mg-3000mg per day) and Vitamin D (especially in winter), and immune boosting herbs like oregano, siberian ginseng and echinacea.

    Thinking about you Vicky and very much hoping that things pick up soon - remember if it is mono that you have been going through, this kind of experience and timescale is very common and it does get better with time it really does - there is hope and whatever the cause is I truly believe you are going to get through it and get fully better and that 2019 is going to be a year of recovery and breakthrough for you. Message any time the guys on the forum here are very supportive, be it mono or anything else, and hang in there - you WILL get through this and back to full health again, trusting God with that.

    Craig

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    • Posted

      Hi Craig,

      thank you so much for your kind words and support. Even though I still dont know what I'm dealing with, this site has been more helpful than any doctor has been. It is such a relief to find people who understand exactly what you are going through and how you feel. So sorry you went through this nasty virus Craig but so happy you have fully recovered and back to your normal self. I will definitely get my blood checked for mono and update on the results.

      Thanks again for your comforting reply, wishing you and your family a very Merry Christmas!!

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    • Posted

      Hi Vicky,

      Thanks for your best wishes and kind words I do appreciate those too. Have been going through a tough year for different reasons to the mono, have had lower back pain and prostatitis and it has just affected my mental health and ability to work and everything, so just hoping and praying for a much better 2019 for us all!

      It's so hard when you don't know for definite what you're dealing with Vicky, and when the doctors are not being helpful or taking the time to really help, offer advice and provide the reassurance you need right now.

      I believe in God Vicky and that He knows more than all the doctors and is a great healer, and I do believe that whatever is the cause that you are going to get through this and get back to full health again, and you are going to be free of this and have lots to look forward to thanks to Jesus.

      Thinking about you and of course message any time - a good book that helped me during recovery was Viruses, Allergies and the Immune System by Jan De Vries. Another thing that has helped with various aches and pains, most notably sciatica, has been a natural alternative treatment called Bowen Therapy - very safe and non evasive, worth having a look into as can help with all sorts of things.

      Hang in there Vicky - you ARE going to get through this and get better, I truly believe that.

      Craig

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    • Posted

      Craig, thanks once again for your encouragement and advice. It's my faith and praying that got me through this awful journey, I strongly believe that. I am sure that God will show me the way to full recovery and He will for you too Craig. I wish all your health issues leave your body very soon and you get back to full health again.

      I used to ask for so many things every year, but all I wish for 2019 and all the years to come is health, health and health, for everyone.

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    • Posted

      Hi Vicky,

      Oh I know when going through a time of illness or any kind of tough time it really puts things into perspective, your health is your wealth that is for sure. I am totally agreeing with your wishes for good health for you and everyone on the forum here!

      It is great to hear about your faith Vicky, that is the thing that will get you through this, asking God for help and to get you through is safely. I believe for sure that He will, and so grateful for your kind message for me too that God will help me through also it means a lot to hear that!

      Hoping so much for a year of recovery and breakthrough in 2019, and that you are feeling settled today - remember just take it each day at a time and as God tells us don't worry about tomorrow, for today's trouble is enough for today.

      Hang in there Vicky - God is working on your circumstances right now and even if you haven't seen the full manifestations yet, then you will for sure I believe that in Jesus' name.

      Craig

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  • Posted

    I know you dont want to be a member of this club, but welcome Vickey.

    I do not think it's too late for them to do an EBV test. It's been 5 months since my first symptom and my EBV levels are still very high, indicating my past infection. So, it would probably still show in your blood.

    I agree that more than anything you just want and need a diagnosis. My doctor did the same, gave me anxiety meds. I never took them. I didn't want a pull, I wanted a diagnosis. It took me 4 doctor visits to get it.

    Like you, I had never experienced anxiety until this illness. It was unbearable for about a week and the insomnia made me crazy. Luckily, I'm improving, though I still have my bad days.

    I am glad to hear you are starting to feel normal again.

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    • Posted

      Hey Jen,

      Just wondering how you have been doing at the moment, hoping so much things are a little more settled. Just wanted to offer some hope and encouragement in relation to the anxiety, i had this too when going through the virus it was so awful and frightening and my confidence really took a severe dunt, but this does lift Jen and as your body starts to recover (which it will, even if it is not overnight, you will get there with this) you will start to feel like yourself again.

      It just takes time to rebuild after this, frustrating I know but just about trying (so hard as it is) to stay patient and take things one day at a time, not beating yourself up if you don't feel great or can't get as much done as you'd like in any given day (it's only natural when going through this but it won't be forever), and remembering that recovery is manifesting and that 2019 is going to be a year of breakthrough and restored health and happiness. Trusting God with that! Thinking about you and hoping for a good day today.

      Craig

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    • Posted

      Hi Jen,

      Thank you so much for your reply. So sorry you are going through this, my first 5 to 6 months were unbearable but after that I started to slowly get some good days and at least that awful off balance feeling and many more became less and less. I will get checked for mono, I still dont know what I'm dealing with but whatever it is, it surely looks like a virus from the wonderful herpes family. I just cant accept that so many doctors I've seen didnt even think about testing for such viruses...I guess we are all from different countries, yet most doctors follow the same pattern and just give out anxiety pills and make you suffer more...

      Its great you are improving and slowly getting your life back... I can totally relate to the bad days. Wishing you and your beloved one a Merry Christmas!

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  • Posted

    Oh Vicky!.....I have had ALL of your symptoms and am still really struggling. I got EBV in Jan 2018. I cannot work and have sleepless night after sleepless night. I look to Mono_too for her comforting and supportive words. I am 49 and was super healthy before this. I have had 3 MRIs and a lumbar puncture to rule out anything more serious - all negative....but honestly THIS feels very serious. I agree this site has been more helpful than any doctor has been. I am quite sure I am somehow stuck in 'fight or flight' and don't know how to get out. It leaves my immune system very weak. We must remain positive....thinking of you....Kiki x

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    • Posted

      Hi Kiki,

      You here more than most have had so much to deal with this year - your body has had to cope with the mono besides other nasty things too I know, I think you've done amazing just to get through and to be on the forums helping and encouraging me and others this last while, I sense that you really are a special person and that God has amazingly good plans and purposes ahead for you, and that whatever has been going on this year is going to somehow be turned into a positive in your life (even if it's hard or impossible to see that right now I do believe it) and you are going to be so much stronger for the experiences you have been through.

      Thinking about you still and hoping that you and your loved ones can have a peaceful and restful Christmas, and praying for peace, joy, good health and many blessings in 2019 - a year of recovery and breakthough I believe it is going to be for you thanks to God.

      Craig

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    • Posted

      Hi Kiki,

      thank you so much for your reply. It seems 2018 wasnt our lucky year since we are both struggling since the beginning of this lovely year. I can totally relate, its just so hard to accept that you are well and healthy and overnight you suddenly wake up with more than 30 symptoms affecting your body head to toe. When this hit me (still not sure its mono but sure has similar symptoms) I couldnt sleep either... I was terrified. These symptoms were so scary that I spent so many nights making so many scary thoughts, adding fear to fear and making symptoms worse. I have had 2 MRIs and all 4 neurologists have ruled out anything serious and are just guessing that this may be anxiety, a thyroid problem that maybe hasnt showed up yet or simply peri menopause and that hormones are just fluctuating. For months I have been googling my symptoms and have found so many people with these awful feelings and trying to get some some answers. I even joined a private menopause facebook group were hundrends of women our age share common symptoms and their doctors have reassured them that its hormones. I found great relief knowing I'm not alone but I was never convinced that this is just hormones...even if it is for us women I am sure by reading so many other stories (mens stories too) that a nasty herpes family virus is behind all these terrible symptoms.

      A book by Claire Weeks helped me tremendously with the anxiety, panic and fear that followed my symptoms,it really relaxed me and helped me to sleep again, I can share the title if you wish.

      I am definitely better the past 3 months after my B12 injection treatment, I feel strong again and am grateful for the doctor that suggested the treatment, Still struggling with this nasty vibration buzzing feeling and some shooting pain every now and then but praying it will go away soon.

      Hang in there, things will get better, stay positive and try to enjoy the holidays...have a very Merry Christmas!

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    • Posted

      Prior to getting a diagnosis the doc told me my symptoms were anxiety related too and that I should see a therapist. I had already been seeing a therapist privately before he suggested it and I continue to do so today. I tell you this virus is horrible. I never experienced anxiety before this virus so it has been a complete shock to the system.

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    • Posted

      wow Vicky.......your illness trajectory is SO like mine although in addition to EBV I tested positive for CMV and Dengue Fever also. I was working in West Africa and Jamaica. I am at that transitional time as well and think that my immune dysfunction has really screwed with my hormones. I agree, these symptoms are not just menopause - definitely viral in my view. I am interested in the title of the book you found helpful. You are welcome to send me a private message.

      I have been so flattened this year and trying everything in my power to regain my health. I started frequency treatment today using a device that delivers frequencies that are resonant with the human body alongside those that target pathogens. It is not a modality that is widely used here in Canada although it is in Germany and other European countries. The phamaceutical companies influence the medical model here at the detriment of holistic healing. We are actually quite behind. I felt a shift after one 1-1/2 hr session. My internal buzzing and some body pains were noticeably diminished. Fingers crossed this will help me regain my immune function so my body can start to work for me again.

      All the best for the holidays!

      Kiki x

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    • Posted

      Thank you so much for your on-going support Craig. I really appreciate you as do so many people here struggling with their serious health issues. You remind and encourage us to stay positive in the face of such adversity.

      I wish you and your loved ones a peace and joy this holiday season and for a 2019 complete with deep healing.

      Kiki x

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    • Posted

      It's so much easier said than done to keep encouraged and a good attitude and optimistic through the depths of the valley Kiki, but I do believe there is hope and there is light at the end of the tunnel for you and for everyone going through tough times on here - it's so hard when we don't understand why things happen, just need to keep trusting God - sometimes it's not until later on or after a tough time that something truly positive for the future has come out of it all, hoping and praying for that for your situation and everyone on here.

      Definitely wishing you peace and joy and hope this Christmas too and for deep healing for you in 2019 also - thank you so much for your support too this year and amazing words. Better times are ahead Kiki, hang in there - you have done so well to get through the things you've had to deal with this year. Thinking about you still.

      Craig

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