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

Posted by change25 @change25, Apr 24, 2021

In the last year my health has rapidly declined, I've recently had a blood test which was normal except for my folate which was low. My Dr conducted an examination, but was unable to properly diagnose me.

Any idea what it may be from these symptoms:
*Pulsating headache, difficulty focusing.
*Weak eyes where they feel droopy along with being dry and painful.
*Dry and sore mouth.
*cheek and jaw pain.
*Changes in pigmentation, face appears gaunt.
*Back pain.
*Odd tingling sensation present in hands and feet.
*cold hands along with an odd rash present on hands and knuckles, which is a deep purple.

I know something isn't right, yet I'm unable to obtain the answers I need. I've added some images before the changes occurred to now so that you can get a context into what's occurred. Any insight will be greatly appreciated, many thanks.

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@change25

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.

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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?

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@becsbuddy

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?

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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.

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@change25

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.

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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!

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@athenalee

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!

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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.

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@change25

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.

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@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?

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@becsbuddy

@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?

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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.

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That's the MRI done, wasn't too bad had an issue with my throat where one of the scans needed to be repeated due to too much head movement. Expected it to be more comfortable than what it was, but all in all it was an okay experience.

I've finally had my first official diagnosis of crohn's disease. I've got pretty significant inflammation in my lower and upper intestine and it's also worked up my entire GI tract and has impacted my eyes, nose and throat. I'm just waiting to see a gastroenterologist to see he what needs to be done to control it. The disease itself has been active for 14 years so not good.

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@change25

That's the MRI done, wasn't too bad had an issue with my throat where one of the scans needed to be repeated due to too much head movement. Expected it to be more comfortable than what it was, but all in all it was an okay experience.

I've finally had my first official diagnosis of crohn's disease. I've got pretty significant inflammation in my lower and upper intestine and it's also worked up my entire GI tract and has impacted my eyes, nose and throat. I'm just waiting to see a gastroenterologist to see he what needs to be done to control it. The disease itself has been active for 14 years so not good.

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@change25 Well, I’m glad you finally got a diagnosis, even if it has taken months! Now you need to come up with a lot of questions for the gastroenterologist. Here is a link to information about Crohn’s disease
Crohn's disease - Symptoms and causes - Mayo Clinic
When are you scheduled to see the gastroenterologist?

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@becsbuddy

@change25 Well, I’m glad you finally got a diagnosis, even if it has taken months! Now you need to come up with a lot of questions for the gastroenterologist. Here is a link to information about Crohn’s disease
Crohn's disease - Symptoms and causes - Mayo Clinic
When are you scheduled to see the gastroenterologist?

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I should receive a letter within the next few weeks and it'll go from there. This has been ongoing for sometime as I was diagnosed with IBS in 2014 which now turns out to be IBD. At least I've finally got a diagnosis but I'm sure there's more to come as there's multiple ongoing symptoms that aren't related to IBD.

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Have you seen a lymes specialist?

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