I am extremely worried my Mono was a misdiagnosis, should I go back to my doctor?

i hope you are right Dodge about feeling worse before you get better . i too had a setback at month 5 family trauma and its made me so ill the last 3 weeks. i wasnt great before but at least i could do a walk at the beach some days.... now my legs wont even go .

and yes im a runner and when i asked dr about when ill be able to work out after im better ... i said 2019 ? he kind of gave me a look ... and said probably not .

i too have been to many drs immunologist infectious disease specialist and basically there is nothing they can do . only useful for blood tests.

Hi Lori / Dodge / Kay,

Still thinking about you guys and sharing in everyone's comments that the low grade fever is absolutely the worst thing to go through constantly with this virus. I didn't have a word or description for it at the time, just felt like this tap rushing through my body but now I understand it to be the low grade fever!

For me this was perhaps the symptom, along with the fatigue which of course is very much interrelated, which was the most horrible to deal with and the thing which was there throughout that I just couldn't seem to get rid of. My experience of it getting better was certainly more of a gradual one, it's almost like someone starts to turn down the thermostat on this low grade fever and although you might still feel it, it's less intense and with me it kept going that way over a period of time until finally it was no longer an issue and you could just get on with life normally again and didn't feel it every day and it was so liberating.

That day will come for each of you, whatever stage you are at right now, I do believe that and hang in there!

Craig

Thanks Craig. I am so looking forward to that day when this damn thing is behind me. As I have said numerous times, i feel like someone has stolen 14 months of my life. It's all a blur.

I know Kay I do hope and pray that day comes soon, I still believe its on its way and that there is going to be long term good health ahead for you and positive to come out of this horrible time and experience in your life, I really do.

Hoping for a settled weekend and that you get to rest and take things easy!

Craig

I also believe it Craig. I know I sound like a miserable old bag at times but that's what this illness does to you.

Oh you definitely don't sound miserable at all Kay, it is totally understandable to feel so frustrated and down with this thing - I think your messages have been articulate and as positive as possible despite the difficult and trying circumstances. Hope you've had a nice dinner with your friend by the time you get this!

Hi Craig,

Dinner is cancelled for today. My friend was at a funeral most of the day and said she had a large lunch so dinner is off. I aint complaning.

yes your social life goes down the tubes with this illness ..... oh how i cant wait to be normal laugh again ... get dressed up. funny how we take little things for granted .. not anymore

Sorry to hear your dinner was cancelled Kay, as you say sometimes it can be a blessing just to get the extra time for rest!!

oh yes lori. I remember the days when i was out every friday and saturday nights plus sometime the odd week night. 7 or 8 mos ago i couldn't keep my eye open past abt 8pm.

yes Craig, i am not sorry it's cancelled as after being at work from 9am to 6pm I was tired anyway. I will meet up with her over the weekend.

i know ! i had an ok day today the first in quite a while met friends at a pub .. drank water but was yawning and shivering the whole time .

so i left and will be in bed by 7pm. i HATE waking up early though it drives me crazy!!

i want to get back to the days i slept until 9 or 10am! im sure when im better ill be more relaxed and get back to a decent schedule.

just want RID of this horrible EVIL virus !!

you will get there lori, hang in there.

Hey Lori and Kay,

Hoping that this can be a better weekend for you guys. That was a big achievement just making it to the pub with friends Lori, even though you're friends maybe don't understand fully what you're going through - really hoping things can get stronger so you can do more things like that more often, it just lifts spirits to see friends and be able to do things that you would normally do when fit and well.

Thinking about you both and remember this things ARE going to get better - today is another day away from the day of infection and towards full recovery - hang in there!

Craig

sorry to hear dodge. your experience sounds very similar to mine. we have to believe things will get better and this horrible virus will just have to run its course. wishing you a speedy recovery. i am now at the 14 month mark and some days i feel like i am back at square one when other days i feel fabulous. i can only use that to my advantage and believe i am on the recovery road as i remember the days when there was not a feel good day coming my way. i kid you not, the first 8-9 mos was pure misery. i honestly did not want to wake up some days as i know it would only be more of the same. now 14 mos on, things have improved drastically. every now and then there is a setback though - sometimes my own fault for doing too much.

we are getting there. yes we will, dodge and lori.

i believe in craig's words and the power or prayers and healing. thank you craig.

Oh thanks Kay it's not my words to hang on it's God's for sure! Thanks to Him we have hope for our recovery, something we must hold onto and keep believing in - He is a good God and wants us well, that I truly believe!!

Hoping you are having a more relaxing weekend 😃

Craig

i totally hear you kay ...sometimes going to bed leads to such dread of those horrible horrible mornings. takes hours to come around . so glad you are having better days now ... and yes when you have good days you want to feel like a human and do human things but we always have to 'be careful' .

Thank you...I hope so. This last week just gone has been one of my better ones....the spaced out feeling seems to have gone along with my constant headaches. I am still getting the odd hour where I do go a bit dizzy and my legs go to jelly, but it wares off. Before it would just stay all day. won't get my hopes up just yet as I know you can set back and I still don't feel great. But want this to be me at my worse now. The days this last week have been so much more manageable.

That is good to hear Dodge that you had a more settled week, really hoping that can be the start of full recovery and remember just take things easy still. It's just like waves up and down so often this thing, but eventually things do and will stabilise and the stormy seas will calm so to speak and you will be able to have confidence in your body's ability to cope with activity and stress again - hang in there Dodge!

Craig

thats great news dodge !! so happy for you ! we will cherish life oh so much more once this nightmare is over .

Yes outstanding Dodge81 , that makes my day hearing someone is coming out of this horrible virus. keep us posted on your recovery. Recovery stories will keep the rest of us going . I Too have been doing better slowly. Its a long lonely road to recovery but some day we will all be there. Stay strong and keep positive good health is coming ....... for all !!!!!

Definitely great to hear you have been doing a bit better Dodge, I know still maybe a bit to go so hang in there though and still thinking about you.

Lori and David, I just want to reassure you that you both are going to get through your hard phases and reach full recovery from this thing. I believe God wants me to say that to you today, that He's in the midst of this trial and is going to bring new comfort and hope and strength at this time, and that full recovery lies ahead. I thought it would never come when going through glandular fever guys, but it did eventually with time and thanks only to God. And I still have a STRONG sense and feeling that you are both going to experience something supernatural and new in your recovery processes, and God just wants you to hang on for now because that new phase and breakthrough is on its way and won't be delayed for much longer.

Hoping for a good and settled day for you guys, remember better times ahead!

Craig

thank you craig ! i too believe in the supernatural after having ghosts in my house ... and being somewhat psychic myself .the ghosts dont scare me as much as this horrible virus !

ive also set up a mini altar with candles that i pray to . i truly believe in faith and power of mind . im on day 2 of sleeping better and not having the 9 hours in the morning from 5-2pm where i literally cry with overwhelming weird fatigue ill feeling .

im not jumping hurdles yet but definitely a slight improvement . thanking you and thanking GOD today for this !

Thank you Craig , that means a lot to me . Thanks for the kind words and payer. You are truly and good man and i will keep

you in my prayer too . Hope and pray all is well for you too . How are you doing ?

Hi Lori,

Oh that is good that you've managed to sleep better the last two nights, really hoping that can continue, you really need that sleep right now and I do hope that your body is settling into a more regular sleep pattern which can give you more energy through the days too.

Faith is so important Lori I know it can be hard to keep strong faith when things are not going well. We just need to keep trusting our Lord when He says He is a good God and has future plans for us that give us hope and a good future! I believe that and just praying the Lord can strengthen each of our faith levels right now!

And on ghosts...the Holy Spirit is the one that I pray can come in to our bodies, lives, homes and circumstances and help each of us - with the power of that Spirit noone we can overcome the barriers in our way!

Craig

Thanks for the kind words David, that really means a lot to me too and you are a good and caring person most definitely!

I just know how badly this virus affected me and really want you to know there is hope and that I believe you are going to get through this and reach full recovery over time thanks to God!

I'm still going through a bit of a time at the moment, up and down a little but God has kept me more settled this last couple of weeks. Have a medical appointment today to get scan results and I really hope and pray it doesn't cause me any more worry or anxiety, quite fragile with everything right now. Just grateful that God has been helping me even though I've not been handling my situation too well a lot of the time.

Thanks for your prayers David - that means so much - I will keep praying for your recovery and breakthrough too my friend and hang in there!

Craig

good luck with your appointment today Craig. Hope it is all positive.

good luck with your appointment praying that it all comes out well. get it over with then your mind can rest . keep us all updated we are all praying for you !!!

Thanks Kay and Lori for your kind words,

A bit unsettled after my appointment yesterday because although my back hasn't got any worse, doctor was a bit concerned about cyst in my psoas, which we knew was there from previous scan, but has grown since then. He wants to keep an eye on it and suggested another scan in a year to see if it has grown more - seems a long time away and I do hope it if was anything more to worry about he would have arranged to have something done sooner.

Just a bit down about it all, especially when he talks about degeneration in my disc, makes me worry about arthritis and things and gets things in to my head and that's when I start worrying, silly I know just can't help it just my nature. Hoping for a better day today, have an osteopath appointment and hoping he can reassure me a bit if I tell him what's been going on.

Craig

You will be fine Craig. Don't worry about it. As you said, if they were so concerned about it they would have recommended you redo scan abit soon. We must believe that all is well even though we might not feel like it at times. I feel rubbish today but I am looking at the positive that I felt almost fabulous Friday, Saturday, Sunday and Monday.

yes craig you are right if it was really something to worry about he wouldnt have said to wait a year . so thankfully hes monitoring it so try not to worry too much . i know from experience that back pain is the worst pain you cant sit lie walk everything is uncomfortable . praying you get some relief from your next appoitment . keep us posted .

yes from EVERYTHING ive read the good days start coming not everyday but sporadic and then recovery !!! yeah!!

i too had 2 ok days friday and saturday awful monday but ok today apart from crashing verrry early . soooo tired but made it through the day !

Yes lori, that seems to be the pattern. It can be abit frustrating at times as it definitely plays tricks with my mental health. I feel like I have a jekyll and hyde personality at times. My friends and colleagues must see me as a nightmare to be around at times.

Thanks so much Lori and Kay for your amazingly kind and supportive words. You guys really have been a great source of help and comfort to me lately and I'm most grateful. I've just got myself so worried and wound up about what the doctor says, it's when you start thinking about a 'tumour' or growth in you, even though it is God willing I pray benign as they think these things usually area, it starts to make you panic. I do hope so much it doesn't keep growing and start to press on things and give me symptoms, all these things have been going through my mind and just got myself all worked up about it.

I do understand so much Kay my mental health has been all over the place with my situations lately, I can maybe have a good day or spell and then all of a sudden something like that appointment on Monday can happen and all the confidence seems to drain out of me and I hit a real low again and feel overwhelmed and everything just so hard to cope.

It's only understandable you guys have been feeling this way too with all the things you've had to deal with lately. I still believe in my heart that God is going to heal you both and us all and just hoping so much for a better and more settled day for you both. Thinking about you each day!

Craig

Thanks alot Craig. I do feel alot better knowing I am not going mad and I am not the only one experiencing some of these things. I am ever so grateful for yours and lori's support.

you're welcome love we all need the support right now ... this horrible evil

virus

we're all so overwhelmed craig please try not to worry and when youre having a down day just try to go with it and think that its one day and tomorrow will only get better.

we can only ride the wave and try not to fight it .

im sure everything will be ok and it will just stay the same or disappear please GOD .

Thanks again Kay and Lori for the supportive words,

Oh you most definitely are not going mad either of you, this virus is real and it's horrible and anyone who tries to say that post viral or whatever isn't a real thing doesn't know what they're talking about!!

But remember post viral is just that - it is an extended period post a nasty virus where your body just needs time and space to rebuild - it does pass and does go away and your body doesn't stay in that state forever, even though I know it feels like it the length of time it can go on 😦

I've just got myself worked up with things a bit just now, needing God's help more than ever myself right now to keep me safe and free of pain and settle me down mentally. I do hope and pray that for each one of us here and still believe that God has a reason for what's happening in each of our lives right now and since we know He is a good, kind, loving, gentle, merciful and compassionate God, we can be sure that His reason is for a good and positive outcome, even if we can't see what that might be or even imagine how that might be right now, I believe that to be His plan for us and that He knows exactly what He's doing and will make sure we get through the valleys we are going through right now.

Craig

Thank you Lori for those words and that prayer, you are amazing x

Amen to that!