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Just diagnosed

Posted , 9 users are following.

emma198181
emma198181

Hi all,

Thought I'd introduce myself, as I've been reading through the forum and gained a lot of insight from it so far.

I was finally diagnosed with mono last week, after a nightmarish month of labs and diabolical symptoms that didn't seem to make sense. But my PP has now confirmed Epstein Barr - and in my case, the second time I've had it (the first was when I was a teenager, and it was nowhere near this awful).

I'm past the acute sore throat and fever, but to be honest that was a breeze compared to the joint pain, muscle pain, lack of appetite, and my GOD the anxiety. I've never experienced anything like it, and I have to say that it did a lot for my sanity to find this forum and discover that this is prevalent amongst lots of people battling this illness. I honestly thought I was losing my mind. I told my PP last week that I was convinced I was dying and that I wouldn't get to watch my little girl grow up.

Since the diagnosis I've been able to manage the anxiety a little better - I know what it's stemming from now. But I have to say, the pain and the shaking are REALLY freaking me out. The shakes aren't too bad at night, but there's always this low-level 'hum' in my muscles, especially my hands. I also get muscle twitches out of nowhere, and have a hard time convincing myself that these things aren't just a bigger problem hiding away beneath the mono (the paranoia isn't very pleasant either).

Has anyone else had the dreadful shakes? I had pins and needles in my hands at the very start, but that went away. Now it feels like my nervous system is just shot. I've asked my PP if I should maybe see a neurologist for peace of mind.

Thanks for listening - hoping for a speedy recovery for everyone living with this hideous illness.

0 likes, 18 replies

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  • olivia30213
    olivia30213 emma198181

    Posted

    Hi Emma,

    I also have active EBV again. I had "mono" 16 years ago in college. This time has been completely different. I did see a neurologist because I was convinced at one point that I had MS or ALS because of the muscle twitching and pins and needles and general attack on my nervous system. I also could not handle stress well-if I would get anxious, my body would literally start to shake like I was shivering. Luckily, many of those symptoms have subsided or become less intense, but I can tell it's either still slightly active or my body is experiencing post viral fatigue because I definitely do not feel 100%.

    Like you I saw many doctors and went many months without a diagnosis. Finally, a Rheumatologist thought to check for it.

    • emma198181
      emma198181 olivia30213

      Posted

      Hi Olivia,

      Isn't it awful? I think for me the neuro symptoms are even worse than the body/joint aches, although those aren't a party either. Like you I've had those 'oh God I must have MS' moments, and the panic is almost unbearable, it just shuts you down. But I have to say, finding so many people on here experiencing similar things has been a great relief. I just don't understand how there isn't more common awareness of just how destructive and persistent EBV can be - what a nightmare!

      I hope your symptoms and fatigue clear up soon!

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