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At a loss, multiple consultations still no answer...any idea?
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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I never had a skin punch test for SFN, my neurologist said she would treat the same way regardless. You might consider seeing a rheumatologist if you haven’t already, they may hopefully be able to provide some answers.
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2 ReactionsThank you. I will research a good rheumatologist in Venice. Maybe I will find some answers to all my symptoms.
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2 ReactionsYou need to find a new neurologist who will do the skin biopsy. You will never have a definitive diagnosis without one.
Hi, @change25 Hello from snowy, freezing cold Colorado. Haven’t heard from you in a while. How are things going for you? Do you have a specific diagnosis yet? Are you getting better? Becky
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.
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9 Reactions@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?
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1 ReactionI would try a hematologist. And endocrinology.
What have your internet searches turned up?
Oh I saw your last comment. WS surprised to see that.
Great news! It IS such a relief to get a name for the darn things! Hope your future treatments work well for you!
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1 ReactionCertainly, 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.
@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?
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