1. < Autoimmune Diseases

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 | @change25 | Feb 14, 2023

Sorry for the lack of communication. I took a prolonged break from the Internet primarily for my mental health and it has definitely helped. As for an update, I've been having treatment for chronic fatigue syndrome which has been helpful, however one of my clinicians noticed some unusual traits. It was then that the rheumatologist partially diagnosed me with Elhers danlos syndrome. I'm now waiting on a geneticist to determine a type which I have.

After researching EDS everything now clicks. All of the odd and unusual symptoms have a source. Even though it's only a diagnosis and not a cure it is such a relief as a couple of medical practitioners were suggesting it was of a psychotic nature.

What I will say is we are our best advocates, if you know something isn't right you must pursue and research until you find the source.

Thanks to everyone who participated in the post - your guidance was invaluable, many thanks again.

REPLY
2 replies
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 15, 2023

@change25
Congratulations on getting a diagnosis! I wish the medical world would stop calling things they can’t diagnose a mental health problem.
Would you mind describing what treatments you had for chronic fatigue?

REPLY
1 reply
magnolia12 | @magnolia12 | Feb 15, 2023

I would try a hematologist. And endocrinology.

What have your internet searches turned up?

Oh I saw your last comment. WS surprised to see that.

REPLY
annewoodmayo | @annewoodmayo | Feb 16, 2023
In reply to @change25 "Sorry for the lack of communication. I took a prolonged break from the Internet primarily for..." + (show)
@change25

Sorry for the lack of communication. I took a prolonged break from the Internet primarily for my mental health and it has definitely helped. As for an update, I've been having treatment for chronic fatigue syndrome which has been helpful, however one of my clinicians noticed some unusual traits. It was then that the rheumatologist partially diagnosed me with Elhers danlos syndrome. I'm now waiting on a geneticist to determine a type which I have.

After researching EDS everything now clicks. All of the odd and unusual symptoms have a source. Even though it's only a diagnosis and not a cure it is such a relief as a couple of medical practitioners were suggesting it was of a psychotic nature.

What I will say is we are our best advocates, if you know something isn't right you must pursue and research until you find the source.

Thanks to everyone who participated in the post - your guidance was invaluable, many thanks again.

Jump to this post

Great news! It IS such a relief to get a name for the darn things! Hope your future treatments work well for you!

REPLY
change25 | @change25 | Feb 16, 2023
In reply to @astaingegerdm "@change25 Congratulations on getting a diagnosis! I wish the medical world would stop calling things they..." + (show)
@astaingegerdm

@change25
Congratulations on getting a diagnosis! I wish the medical world would stop calling things they can’t diagnose a mental health problem.
Would you mind describing what treatments you had for chronic fatigue?

Jump to this post

Certainly, I've found that if you're careful with your wording the more like you are to be understood. It shouldn't be as difficult as it is though.

Of course, initially I did a weekly diary regarding symptom onset. Followed by this we discussed autonomic dysfunction and factors influencing these symptoms. Not too long after we tried a variety of medications along with 3 months of folate injections. I'm just about to undergo a few sessions of CBT followed by an analysis of my gut microbiome. They've got an interesting new trial which can improve GI symptoms as noticeable changes are evident in those with CFS.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 19, 2023
In reply to @change25 "Sorry for the lack of communication. I took a prolonged break from the Internet primarily for..." + (show)
@change25

Sorry for the lack of communication. I took a prolonged break from the Internet primarily for my mental health and it has definitely helped. As for an update, I've been having treatment for chronic fatigue syndrome which has been helpful, however one of my clinicians noticed some unusual traits. It was then that the rheumatologist partially diagnosed me with Elhers danlos syndrome. I'm now waiting on a geneticist to determine a type which I have.

After researching EDS everything now clicks. All of the odd and unusual symptoms have a source. Even though it's only a diagnosis and not a cure it is such a relief as a couple of medical practitioners were suggesting it was of a psychotic nature.

What I will say is we are our best advocates, if you know something isn't right you must pursue and research until you find the source.

Thanks to everyone who participated in the post - your guidance was invaluable, many thanks again.

Jump to this post

@change25. Oh, I am so glad that you finally have a diagnosis! Whether it’s good or bad, it’s still a diagnosis and something that you can work with.
How is the rest of your life going?

REPLY
1 reply
change25 | @change25 | Feb 21, 2023
In reply to @becsbuddy "@change25. Oh, I am so glad that you finally have a diagnosis! Whether it’s good or..." + (show)
@becsbuddy

@change25. Oh, I am so glad that you finally have a diagnosis! Whether it’s good or bad, it’s still a diagnosis and something that you can work with.
How is the rest of your life going?

Jump to this post

Absolutely, it's the relief that the diagnosis made more than anything. Knowing an issue existed rather than it being a psychological problem was key to me.

I still have my good and bad days, my mind is in a far better position though. My biggest breakthrough recently was going from 3 meals to 2 meals with the 18-6 rule. I'm really strict in that I won't snack at all in between meals. I feel that the body has more time to rest as opposed to breaking down food and constantly releasing chemicals. We are always learning and evolving and it's the only way to move forward.

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 28, 2023
In reply to @change25 "Absolutely, it's the relief that the diagnosis made more than anything. Knowing an issue existed rather..." + (show)
@change25

Absolutely, it's the relief that the diagnosis made more than anything. Knowing an issue existed rather than it being a psychological problem was key to me.

I still have my good and bad days, my mind is in a far better position though. My biggest breakthrough recently was going from 3 meals to 2 meals with the 18-6 rule. I'm really strict in that I won't snack at all in between meals. I feel that the body has more time to rest as opposed to breaking down food and constantly releasing chemicals. We are always learning and evolving and it's the only way to move forward.

Jump to this post

@change25 I just happened across your name today and wondered how you were doing. Please tell me that all is going well!

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