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

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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@becsbuddy

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

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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@ess77

@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

Jump to this post

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

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

REPLY
@ess77

@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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Oh no, that's awful. Must've been a terrifying time, not to mention the stress of your son being unwell also. Like you say it was the perfect place to be where they've picked it up and hopefully you're feeling much better now. If you don't mind me asking how's your son doing?

Yeah, I'm just concerned with what's been going on that my body may react to it… though if it's needed I suppose it's worth the risk. I've still not had my covid vaccine as my Dr wants me to wait until my MRI scan.

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@change25

Oh no, that's awful. Must've been a terrifying time, not to mention the stress of your son being unwell also. Like you say it was the perfect place to be where they've picked it up and hopefully you're feeling much better now. If you don't mind me asking how's your son doing?

Yeah, I'm just concerned with what's been going on that my body may react to it… though if it's needed I suppose it's worth the risk. I've still not had my covid vaccine as my Dr wants me to wait until my MRI scan.

Jump to this post

@change25, @becsbuddy and others…

My son is better. Thank you for asking. He was quite ill, his heart wouldn't settle down and he was having tough reaction to med withdrawal. He was throwing up for several days, out of control. With throwing up so often, he wasn't able to keep his med levels steady, so blood pressure, pain, all the meds weren't in his system doing their jobs.

He's 52 years old, disabled since he was 35 w/dystonia, a movement disorder, rare and difficult to diagnose and treat. He's in severe shoulder/arm/head nerve pain, lost the use of his left arm, has dilaudud pump and gets regular botox shots from specialist at Mayo. Now, he gets regular massage therapy at Mayo. Hope to get additional help to stabilize his life, to give more independence especially since I have these new difficult dx. I must back out of taking care of his meds, setting up pills, ordering groceries, driving, overseeing his scheduling, etc.

So, you see? You are quite blessed to have your life and independence.And, you are well on your way to getting help and answers. Keep up your good, hard work for yourself.

Bless you and keep up the good work!
Elizabeth

REPLY
@ess77

@change25, @becsbuddy and others…

My son is better. Thank you for asking. He was quite ill, his heart wouldn't settle down and he was having tough reaction to med withdrawal. He was throwing up for several days, out of control. With throwing up so often, he wasn't able to keep his med levels steady, so blood pressure, pain, all the meds weren't in his system doing their jobs.

He's 52 years old, disabled since he was 35 w/dystonia, a movement disorder, rare and difficult to diagnose and treat. He's in severe shoulder/arm/head nerve pain, lost the use of his left arm, has dilaudud pump and gets regular botox shots from specialist at Mayo. Now, he gets regular massage therapy at Mayo. Hope to get additional help to stabilize his life, to give more independence especially since I have these new difficult dx. I must back out of taking care of his meds, setting up pills, ordering groceries, driving, overseeing his scheduling, etc.

So, you see? You are quite blessed to have your life and independence.And, you are well on your way to getting help and answers. Keep up your good, hard work for yourself.

Bless you and keep up the good work!
Elizabeth

Jump to this post

You're right, perspective is so important and your often blinded in the moment until you realise that there are things to be grateful for. Even though you're suffering the ordeals others are facing are far greater.

I'm glad you have one another, you are both very strong and brave. I hope you both continue to see improvements in your health and you never know with how science is progressing a cure may not be far away.

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@change25

You're right, perspective is so important and your often blinded in the moment until you realise that there are things to be grateful for. Even though you're suffering the ordeals others are facing are far greater.

I'm glad you have one another, you are both very strong and brave. I hope you both continue to see improvements in your health and you never know with how science is progressing a cure may not be far away.

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Your response is so thoughtful and caring! Your turn will come and you will get better. We’re all rooting for you!

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@change25

You're right, perspective is so important and your often blinded in the moment until you realise that there are things to be grateful for. Even though you're suffering the ordeals others are facing are far greater.

I'm glad you have one another, you are both very strong and brave. I hope you both continue to see improvements in your health and you never know with how science is progressing a cure may not be far away.

Jump to this post

@change25 How have you been doing? Any set date for an MRI? Thinking of you and hoping for the best!

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@becsbuddy

@change25 How have you been doing? Any set date for an MRI? Thinking of you and hoping for the best!

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Hey Becky, you're so thoughtful thanks for thinking of me. The past few days haven't been great but I'm trying to keep my spirits up. I do have some good news in that my MRI is scheduled to take place in 12 days. In an earlier post I grumbled at the NHS but I must retract that as they've been brilliant. With the backlog you're expected to wait 12-16 weeks for an MRI and mine will have been 6 weeks…very lucky indeed.

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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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