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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@petuniamom567

Have you considered Chronic Faitigue Syndrome now called ME/CFS. The English discovered on various scans that the brain lining was involved. This, however, doesn't mean a cure exists. Since researchers seem to searching in their own particular directions. Also, have you been tested for Herpes Simplex One and Ebstein Barr Syndrome (mono?) Apparently, most of us walk around with titers to this. There are drugs that treat the Herpes group. They must be taken by mouth not rubbed on your mouth. Apparently, they don't always work. And, as has been said, a good rheumatologist is essential as an essential starting point. You might add a good neurologist,too. I must say I'm telling you all this and none of it has helped me. However, it's worth a try. Good luck. BiskitsMomma

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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?

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@change25

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?

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@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!

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@athenalee

@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!

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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.

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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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@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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