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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@joannemm30809 i just saw this article in the Mayo Clinic blog section. I thought of you right away because it talks about dysautonomia. I’d the link doesn’t work, look on the right side of the Connect home page where all the current discussions are listed.

EDS and POTS | Mayo Clinic Connect https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/eds-and-pots/
Have you found any doctors in south Florida who can help?

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@becsbuddy

@joannemm30809 i just saw this article in the Mayo Clinic blog section. I thought of you right away because it talks about dysautonomia. I’d the link doesn’t work, look on the right side of the Connect home page where all the current discussions are listed.

EDS and POTS | Mayo Clinic Connect https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/eds-and-pots/
Have you found any doctors in south Florida who can help?

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I'm in process of moving from Lakeland Florida to Venice FL and will be starting over trying to find some knowledgeable doctors to help me. Tampa is not too far from Venice but my neurologist there has not been able to diagnose me and refuses to do a Small Nerve Fiber test, he stated he does not do that type test. So I guess I'll be looking for another neurologist. I'll need to also find a good cardiology near Venice too.

I had a Tilt table test done one year ago but it was negative for POTS but I have all the other strange symptoms of ANS malfunction YET I do not really fit into the 15 different categories of Dysautonomia.

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@joannemm30809

I'm in process of moving from Lakeland Florida to Venice FL and will be starting over trying to find some knowledgeable doctors to help me. Tampa is not too far from Venice but my neurologist there has not been able to diagnose me and refuses to do a Small Nerve Fiber test, he stated he does not do that type test. So I guess I'll be looking for another neurologist. I'll need to also find a good cardiology near Venice too.

I had a Tilt table test done one year ago but it was negative for POTS but I have all the other strange symptoms of ANS malfunction YET I do not really fit into the 15 different categories of Dysautonomia.

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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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Thank you. I will research a good rheumatologist in Venice. Maybe I will find some answers to all my symptoms.

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@joannemm30809

Thank you. I will research a good rheumatologist in Venice. Maybe I will find some answers to all my symptoms.

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You need to find a new neurologist who will do the skin biopsy. You will never have a definitive diagnosis without one.

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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

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