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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@becsbuddy

I love your term ‘Mr. annoying’! I don’t think I want to call you by that name, so could you maybe tell me your real name?

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I can just imagine when my phone number is displayed on their system the reaction of "oh no it's him again"

Of course, my name is Edward.

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@change25

I can just imagine when my phone number is displayed on their system the reaction of "oh no it's him again"

Of course, my name is Edward.

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You sound like your spirits have lifted! Just keep on being ‘Mr. annoying’, Edward!

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@becsbuddy

You sound like your spirits have lifted! Just keep on being ‘Mr. annoying’, Edward!

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Definitely, it's reassuring that there's something wrong; where it isn't some phantom illness.

Initially when those blood test results came back eveything began stagnating. While it is never nice to be diagnosed with something that is potentially life changing at least the steps are there to deal with whatever comes next.

I know a lot of people on this forum go for too long without answers so again I'm extremely grateful and fortunate that it has gone the way it has.

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@change25 Your pictures the red butterfly on your cheeks, and mine, set to to searching in my own records and scans. I found those pictures, or like them, on places like Wikipedia, and on my own genome analysis. I do not know about yours, but mine is now dx as "Systemic Capillary Leak Syndrome", also called "Clarkson's Disease." It is probably related to the genes/proteins related to my GSN/FKTN/Brugada syndromes JAK2, CALR, or MPL. I have the JAK2, the CALR, but not the MPL. I am personally very glad to know it is not the shingles the doc and hospital called it on me, without evidence.

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@oldkarl

@change25 Your pictures the red butterfly on your cheeks, and mine, set to to searching in my own records and scans. I found those pictures, or like them, on places like Wikipedia, and on my own genome analysis. I do not know about yours, but mine is now dx as "Systemic Capillary Leak Syndrome", also called "Clarkson's Disease." It is probably related to the genes/proteins related to my GSN/FKTN/Brugada syndromes JAK2, CALR, or MPL. I have the JAK2, the CALR, but not the MPL. I am personally very glad to know it is not the shingles the doc and hospital called it on me, without evidence.

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Hey Karl, a dermatologist diagnosed me with rosacea. There could be more to the rash than what was previously diagnosed. So it may be worth going elsewhere for a 2nd opinion, cheers.

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I have been to about twenty dermatologists, and received dx from about 4-5 of them as rosacea. About twenty others dxed everything from shingles to frostbite. But there was always some negative kicker in the dx. But it finally came down to a clear dx from genetics and clinical data.

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@change25

Hey Karl, a dermatologist diagnosed me with rosacea. There could be more to the rash than what was previously diagnosed. So it may be worth going elsewhere for a 2nd opinion, cheers.

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@change25 Good morning. Just wondering how you’ve been doing! Anything new to tell us?

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@becsbuddy

@change25 Good morning. Just wondering how you’ve been doing! Anything new to tell us?

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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

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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@becsbuddy

@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

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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@becsbuddy

@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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