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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jwillits8 | @jwillits8 | Nov 8, 2021
In reply to @joannemm30809 "I have been extremely sick over the last 2 years with a multitude and I mean..." + (show)
@joannemm30809

I have been extremely sick over the last 2 years with a multitude and I mean over a dozen symptoms that affect me from head to toe yet everything is coming back normal and I've been through several neurologists and several endocrinologist and cardiologist and gastrologist besides my primary care doctor and everything comes back normal but I feel like I'm one breath away from death that's how sick I feel and it's a daily struggle.

I am absolutely shocked at the lack of attention or the lack of understanding from all these specialists and doctors and how many of them are very nonchalant and hands-off and want to get you in and out of their office quickly and write you a prescription for anxiety or antidepressant always trying to blame it on stress or anxiety. That's the easy way out and that's the way out most of these doctors take because they just seem like they do not really want to put any effort into finding out what's wrong unless it's an easy way like an MRI telling them exactly what's wrong.

So every day over the last two years after paying sky-high medical insurance cost and co-pays and deductibles, paying these outrageously high medical insurance cost I feel like I have half a$$ed treatment by so many doctors. What exactly am I paying for with these sky high medical insurance premiums when the majority of these doctors just many of them seem clueless and they just don't want to put any real effort into finding out what's wrong and they just want to blame it on stress. I'm literally fed up with the whole system.

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@joannemm30809
Have you found any answers yet? I’ve gone through similar what you have this last year, with being told anxiety. Most Primary physicians do not look beyond ordinary. They don’t look for rare disorders. Same with ER physicians. I have a neurologist that did a neck scan and found I have Fibromuscular dysplasia.
Keep being persistent. I never took the anxiety drugs and keep searching. Write down your symptoms and keep calling other doctors and medical facilities.

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athenalee | @athenalee | Nov 9, 2021
In reply to @oldkarl "@athenalee.. Your story could be mine, except that my chronic liver disease has now progressed into..." + (show)
@oldkarl

@athenalee.. Your story could be mine, except that my chronic liver disease has now progressed into stage 4, and the total of my cancer surgeries and procedures is now 53. Probably hit 54 this week. oldkarl

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OldKarl, I admire your steadfastness at figuring out how genes impact our health. I’m realizing that more and more. And, how unfortunate events, like infections, in our lives can trigger our genes to cause disease. And, in my case, Sjogren’s was triggered and has gone rampant in throughout my body following my liver transplant.

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1 reply
oldkarl | @oldkarl | Nov 10, 2021
In reply to @athenalee "OldKarl, I admire your steadfastness at figuring out how genes impact our health. I’m realizing that..." + (show)
@athenalee

OldKarl, I admire your steadfastness at figuring out how genes impact our health. I’m realizing that more and more. And, how unfortunate events, like infections, in our lives can trigger our genes to cause disease. And, in my case, Sjogren’s was triggered and has gone rampant in throughout my body following my liver transplant.

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@athenalee , Thanks, my friend. As I learn more and more about genes, I become, like you, more aware of stuff I reLLY DID NOT SEE EARLIER. Whoops, the cat just decided to help me. Anyway, Sjogren's is one that really makes a mess out of many diseases which would be almost irrelevant otherwise. LGMD2m, AGel (GSN), Cardiomyopathy, CPVT. Lissencephaly, Clarkson's, etc. Chronic Leukemia. And infections and many environmental issues just add to the pile. All this can take a simple issue like cancer and make it just awful. I apparently am getting ready to undergo another basal cell removal from my face. 54th cancer surgery. And for some better understanding of what we go through with Sjogren's and this other stuff, watch "Apollo 13" again, and pay attention to the emotions, especially of the men and their families as they struggle with their lives and events. Take care. @oldkarl

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1 reply
athenalee | @athenalee | Nov 11, 2021
In reply to @oldkarl "@athenalee , Thanks, my friend. As I learn more and more about genes, I become, like..." + (show)
@oldkarl

@athenalee , Thanks, my friend. As I learn more and more about genes, I become, like you, more aware of stuff I reLLY DID NOT SEE EARLIER. Whoops, the cat just decided to help me. Anyway, Sjogren's is one that really makes a mess out of many diseases which would be almost irrelevant otherwise. LGMD2m, AGel (GSN), Cardiomyopathy, CPVT. Lissencephaly, Clarkson's, etc. Chronic Leukemia. And infections and many environmental issues just add to the pile. All this can take a simple issue like cancer and make it just awful. I apparently am getting ready to undergo another basal cell removal from my face. 54th cancer surgery. And for some better understanding of what we go through with Sjogren's and this other stuff, watch "Apollo 13" again, and pay attention to the emotions, especially of the men and their families as they struggle with their lives and events. Take care. @oldkarl

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I agree, I certainly had Sjogren’s symptoms for 15 years or more, but it’s certainly gone into hyperdrive and wrecked havoc all over my body in less than a year. Check out the article I posted in the Sjogren’s discussion that ran in the NY Times. Short, but amazing that Sjogren’s was even discussed in the mainstream media.

I think along with genes, stem cell research will hold the key to curing autoimmune diseases and other illnesses. It’s amazing what researchers have been able to do already with stem cell therapy.

I’ll put Apollo 13 on my rewatch list! Athena

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 14, 2021

@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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1 reply
joannemm34293 | @joannemm30809 | Nov 15, 2021
In reply to @becsbuddy "@joannemm30809 i just saw this article in the Mayo Clinic blog section. I thought of you..." + (show)
@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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1 reply
helennicola | @helennicola | Nov 15, 2021
In reply to @joannemm30809 "I'm in process of moving from Lakeland Florida to Venice FL and will be starting over..." + (show)
@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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joannemm34293 | @joannemm30809 | Nov 15, 2021

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

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1 reply
dianecostella | @dianecostella | Nov 16, 2021
In reply to @joannemm30809 "Thank you. I will research a good rheumatologist in Venice. Maybe I will find some answers..." + (show)
@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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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 20, 2022

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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