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

Hey Becky, nice to hear from you. I hope you are doing well.

It's been pretty stagnant... I did see a dermatologist recently and they couldn't explain my rash and lip swelling so I've been referred to another specialist. I've also got an MRI scheduled but with the backlog it may take sometime. As of late I've had some chest and leg pain and an awful headaches so my GP wants me to go for an ECG tomorrow just to be careful. It's the not knowing which is frustrating as I thought some progress was being made. I'm just hopeful that the MRI will show something as anything is better than nothing regardless of how serious it is.

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@change25. Gee, I was hoping that you were getting better! Yes, not knowing and waiting are the hardest part of health problems. Are you able to get out and do things? Have you had an MRI before? I have them probably 3-4 times a year. :=(
Will you let me know how the ECG comes out?

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For sure, it's just one of those things unfortunately. I'm remaining positive that a diagnosis is just around the corner.

I've not had one before, are they fairly quick? I'm somewhat concerned with the contrast dye, though I'm sure that'll be discussed prior to my appointment. The ECG showed inflammation so I've been prescribed anti-inflammatory drugs.

Yeah, mobility isn't a problem just the pain and fatigue is fairly consistent.

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@change25 Unfortunately, fatigue is part of a lot off illness until they’re under control. I certainly hope that you get some answers soon.
I can honestly say that MRIs are not a problem for me now. They are loud, though! The technicians will ask if you get claustrophobic, since the MRI machine is a small space. The contrast can cause allergic reactions in some people, but the staff is prepared. The MRI of my head usually takes 45 minutes.
The ECG you’ve mentioned, was it of your heart? Did the doctor say anything about the inflammation?

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Thank you, my only concern is that the MRI won't reveal anything then I'm not sure what the next step will be.

Not really, just that the heartbeat was abnormal and he diagnosed me with myocarditis. In the meantime it is being monitored and he's requested to have it checked in my upcoming MRI scan.

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Here is some info on myocarditis. It can be serious so I’m glad the doctors are keeping an eye on you.
Myocarditis - Symptoms and causes - Mayo Clinic
So the MRI is to look closer at your heart. Are they going to focus on any other areas?

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Thanks as always Becky, that's very useful.

No, the MRI was separate as they wanted to investigate the cause of my headaches along with the pain in my face/limbs. So this will just be added to that scan. I'm guessing I'll be lying still for awhile.

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@change25, @becsbuddy and all
Hello, My friend across the pond! How wonderful to catch up a bit on your fun issues. Isn't Becky wonderful...she's sticking right with you on this crazy journey of yours.

MRI's are lots of fun. especially if you dislike close spaces or loud noises. I have had multiple MRI tests, about 2-3 each year for last couple years, as I've been developing all kinds of strange new issues. I have claustophobia, don't like elevators even. I also have a problem with loud noises. So, it's been a trial by fire for me.

If I may, a couple of pointers.

Have a pleasant, open mind and attitude that this test is necessary and will give your doctors answers leading to diagnosis, treatment and healing. That sets you up for success. Then, if you're the anxious type, let the doctor know now, before you go, so he can give you a calming med like a bit of valium or xanax or whatever you take or he suggests. I usually take a very small xanax before an MRI.

Also, we have wonderful headphones that go over our heads and ears. That helps lessen the noise issues and they ask what kind of music I like. I always choose like classical, piano music. I played piano forever and it's special. Request your favorite genre and set yourself comfy for a nice, 'relaxing' time, however long it may be. Doesn't matter. It is what it is, but if you can allow yourself to drift into a zone with the music, you'll be fine.

I hope this helps a bit. Some folks don't have any issues with this test. Happens I do. But, as I've mentioned, there are ways to handle it for your better good!

Hope this helps. Hope the MRI is soon and answer lots of questions.
Bless you.
elizabeth

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Wonderful insight as always Elizabeth, thank you. I'm sorry to hear about your ongoing issues, did the MRI help?

It is good that it isn't an invasive procedure although an IV is needed if the contrast dye is deemed necessary. It'll be at least 10 weeks from now until I'm seen as the backlog is so bad, at least I've got one though.

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@change25, and all.
Pooh! What's a little IV in the arm? Just an itty, bitty IV with possibly a slight feeling of warmth over the body. That's all I have, no adverse reaction. Hopefully, you'll find it as easy.

Yes, actually. I was in the Mayo Hospital visiting my son who was admitted the previous day. He was finally asleep and I became ill, had an episode w/vision problems, hearing and understanding what the tv and other people were saying. It was similar to stroke or some kind of such issue. If you have to have an event like this, best place is in the Mayo Hospital.

I was taken to ED, unable to walk or talk clearly or communicate well. I had a brain MRI to ck for stoke or blood vessel issues or clot or whatever. I did not have a stroke, but the radiologist strongly suggested a referral to an ENT consult for acute, possibly chronic sphenoid sinus infection, possible fungus balls, and a cyst in the sphenoid. He also saw some new bone degeneration in the jaw, neck, cervical vertebrae, etc. He mentioned unusual blood vessel damage...

So, after 3 days in hospital, released the same day as my son who was 2 floors up, within 3 days I've seen an ENT specialist, diagnosed with sphenoid infection - probably picked up previously in hospital and quite serious; it is antibiotic resistant and I'm now using a nasal rinse 2x daily, with tobramycin formulated antibiotic, methadextrate sp?, steroid, and saline solution. In a week I visit the ENT surgeon and very likely sinus surgery soon to clean out the infection, remove some infected bone and the cyst. All found incidentally by the MRI.

This all led to an infectious disease consult, to address the multiple UTI and other infections, increased dramatically this year. Also, to a nephrology consult, after hospitalization w/UTI. So, this one little MRI led to Infectious Disease consult, ENT and Nephrology consults. Nephrology sent me to rheumatology consult, to verify her diagnosis of vasculitis. Yuck!

See what one little MRI did? It may have given me a few extra years, at least I think the time I have left will have much improved quality. Not good diagnoses, but good to get them since I do have the issues. And, the sooner I get started with some treatment, the better my chances for some remission and extension of my life.

This is all good and I'm thankful for the series of events leading to these findings. I believe God is in control, but I and the doctors are doing our part.

This is what I see for you, with hopefully less difficult findings. Every step is important. It truly is a process. Good for you to get started, following through, and insisting on finding answers. Smart, proactive behavior..

Blessings to you. Think good thoughts, follow through and find the answers that lead to diagnosis and treatment and healing. Good for you!
elizabeth

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