At a loss, multiple consultations still no answer...any idea?

Thanks for getting in touch. Yeah, the rheumatologist I saw thought it may indeed be CFS but no official diagnosis was given an I haven't been referred to my local department so I'm still waiting on that. Circumstances have been tricky due to covid so testing has stagnated, however I have recently had a FIT stool test which revealed some abnormalities and I've been offered a emg/ncs test which is taking place tomorrow. This will then be followed by an MRI which will hopefully identify what's wrong. I've not heard about either of those, would a routine blood test reveal if you have it?

@change25, I’ve been wondering how your medical appointments and tests are progressing. While it would be good for you to get answers, I sure hope it’s not CFS.

There was some discussion on CFS on Connect recently and @johnbishop posted this incredibly moving and informative Ted Talk about it. As I didn’t know much about the disease, I watched it. I recommend it if you’ve not seen it - https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose/up-next

Best wishes on your finding a diagnosis soon!

Hey @athenalee, I hope your are doing well. Thanks for the link, very scary illness indeed. At one point it wasn't recognised but in some cases biological markers can be used for a possible diagnosis. I have faith that the MRI will reveal something. I did ask my parents to monitor changes in my skull as indentations have formed that weren't previously there and I do believe that's the key to a diagnosis. Where they agree that they've definitely worsened over time.

Just a quick update from my NCS/EMG test. It was at a new hospital which had a very confusing layout - luckily I managed to make the appointment with minutes to spare and was immediately called through. The neurologist and technician were brilliant, but I wish I'd have mentally prepared for the pain as at times it was fairly uncomfortable. The good news is the neurologist believes he knows what the cause is but needs the MRI results to confirm this. So it's just the MRI to go and hopefully I'll have the information I need.

This is 1/2 great news! At least you found the clinic on time! Nothing worse than getting lost in a hospital. Now just to wait for the MRI. Remember i told you that it would be loud and you cant move. No pain, though.
What was the reason for the test?

It was a peculiar layout, thankfully I went into the correct building. The neurologist requested it as I was experiencing back pain and tingling/numbness in my extremities.

No pain is good, I'm looking forward to the MRI as I believe it's the key to unlocking this. It takes up to 4 weeks for the MRI results to come back so probably looking at mid to late November until I'll know something.

Yup, the EMG is painful! I’m glad you’re getting the MRI, I’ve had several. Yes, certainly uncomfortable, but as Becky says, no pain. The brain one does set off the nerves though. Just remember to breathe well when the tech tells you to! But, amazing what they can diagnose and rule out. Sending positive thoughts for a diagnosis and remedy!

Thank you. I didn't expect the EMG to feel how it did, if anything I thought I'd experience a little shock but it was quite an intense pain. When I saw the technician crank up the dial I was pretty concerned but thankfully it was just about bearable. Will do, not long now and my Dr is phoning me on Tuesday to discuss some abnormal results so at least things are starting to show now! All the best.

@change25 You know, i have forgotten to ask about the myocarditis. Sorry. It seems to be on the ‘back burner’ even with your doctors. We’re you ever given antibiotics?

No worries, I myself had forgotten about until now. The Dr wasn't too concerned with the readings and assured me that rest and antibiotics should do the trick. He did request that it was to be checked along with my head MRI. The chest pain has improved though I've noticed my vein in my neck spasming/ pulsating which has concerned me somewhat, though it could be normal.