Been suffering since March 2018...is it too late for a mono diagnosis?
Posted , 12 users are following.
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
0 likes, 27 replies
kaymono vicky29880
Posted
I can totally relate to what you said Vicky. And yes, I did have that internal vibrating feeling and even now sometimes 16 mos on I still get that feeling pop up for a day or so.
I did not get the ebv test done until 13 mos after symptoms started and quite frankly I had to demand the test. No doc ever suggested it for the 13 mos I was unwell.
Mine did show a past infection and based on my symptoms the doc concluded that I must have had caught the virus in the past year and a half.
I would suggest you still get it done and hopefully even if it is a past infection, it will put your mind at rest and you can conclude that what you are experiencing are post viral symptoms.
vicky29880 kaymono
Posted
Kaymono, thank you so much for sharing your story. I can surely imagine what you went through until you finally got some answers. I'm at the exact same stage, almost 10 months now, suffering without any answers. From the doctors side it's all guess work telling me it could be depression, could be anxiety disorder, could be thyroid problem that hasn't showed up yet, or simply peri menopause and fluctuating hormones. I was a mess, and always walking out of doctors offices with a prescription for anti depressants or anti anxiety meds when all the time I was trying to convince them that I wasn't depressed and that it was the symptoms that were causing the anxiety!
I am definitely going to get my blood tested, I just have to find a new doctor now and simply demand it. Its just such a pity that I wasn't tested in the first months this showed up to put my mind at rest. I was afraid nothing will show up in the blood tests after 10 months but all your answers have given me hope that its not too late for answers.
How are you coping now Kay? I hope you are feeling better and that all of these horrible symptoms are leaving your body. Enjoy your holidays with your loved ones and have a very Merry Christmas!!
craig07920 vicky29880
Posted
Hoping so much Vicky that you can find a doctor who will do the blood test(s) you are looking for, it's so frustrating when doctor's put up barriers to the simplest of requests, I've experienced that too and there's no way it should be such a fight just to get a simple blood test which could shed some light and hopefully lead to some reassurance / breakthrough.
The depression / anxiety caused by this virus is a terrible thing to go through Vicky, most definitely empathising and I know words can't describe how tough and painful and frightening the low moments and periods can be. Just remember there is hope and that things will get better, and that God knows the bigger picture, will keep you in my thoughts and prayers. Hang in there.
Craig
kaymono vicky29880
Posted
Hi Vicky,
At the moment I have good and bad days. Definitely more good than bad though.
I am 16 mos in so I have come a long way. A year ago I was really depressed, anxious and unable yo sleep more than abt 3 or 4 hours a night. Now I would say the depression is mild and I know what my anxiety triggers are so i have some control to a certain extent.
Having a positive attitude helps as well as getting adequate sleep.
I am one of the lucky ones despite feeling poorly was able to work throughout.
craig07920 kaymono
Posted
You've made a lot of progress in a year Kay, and still believing you're going to make even more progress until you feel fully well again over the coming year. To live through this virus and the horrible symptoms and emotional side of it all for 16 months can't be described in words, but you're a survivor Kay and you're getting through this and are going to get to the light at the end of the tunnel.
Hoping you had a good sleep last night and are feeling settled and not too tired today. I seen some friends from my old running club I hadn't seen for years last night, it really cheered me up to see these guys.
Craig
Dodge81 vicky29880
Posted
It's a shame you've had some bad luck with the doctors....well sounds like we all have. I've found a doctor I like now and make sure I always request her. If not available I'll go on another day. I had a thyroid function blood test and an ultrasound on my neck to make sure it wasn't my thyroid. Losing weight and the body shaking can be all part of an over active thyroid, so it's worth having it checked out....but these symptoms are also common with EBV, which in my case looks the reason for my symptoms.
craig07920 Dodge81
Posted
Hey Dodge,
It's good you have found a good doctor who is helpful, I am the same if I find a good doctor I always try to stick with that one, it can be so hard to find someone who really takes the time and gives the help you need. Too many don't take the time or appreciate how vulnerable and emotionally fragile you are when going through this virus or take that into consideration.
Definitely hoping for a good and peaceful Christmas for you Dodge and Vicky, Kay and everyone on the site here. Thinking about you still and just hoping and praying for recovery, new strength and fresh healing and help from the Lord over the Christmas period and in 2019 for us all.
Craig
Jaycee192 Dodge81
Posted
your message really helped me a bit Dodge. I'm currently sitting here stressed the heck out. Hopefully you're still around these forums.