Does it seem like autoimmune diseases are on the rise?

I’m so very sorry to hear your traumatizing ordeal. It’s such a crime in our country that you are suffering so and need to pay for costly tests which may help provide some light on your varied symptoms. It takes answers to at least give one hope and some sort of path forward. I’m sure there is an answer for you and you just need to find the right provider to think out of the box enough to find it. Not an easy task I know.

I can tell you from my experience, at least, that chills and terrible cramping are a liver disease symptom. So, perhaps your follow up hepatic labs may reveal more. There are several autoimmune diseases that can cause liver disease.

Have you been on the website smartpatients.com? There are some good patient discussions on it by people with autoimmune diseases. I was reading through one today where people listed the multiple autoimmune diseases they have. Like Connect, it may or may not offer answers, but I find patient guidance and camaraderie very helpful. I’ll be thinking of you and sending many positive and hopeful thoughts your way.

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It's been 1.8 years of progressive debilitating symptoms yet doctors from neurologists to endocrinologist to cardiologist and gastrologist can not yet, even after dozens of tests. X-rays, blood and urine workups etc, can not figure out what I have. Only thing I know are these symptoms have morphed and episodes have progressed from a few times a month back in Dec 2019 to now almost daily episodes of frightening and debilitating symptoms.

My symptoms started as: pins. Tingling, numbness in my feet and calves along with visual disturbances and racing heart.
With a few months the pins, needles and numbness spread to my hands and face with muscle twitching throughout my body. Every episode starts with heightened visual disturbances and pins, needles and numbness in lower legs and around my mouth and chin area. THE other symptom I now have along with all the other symptoms is bowel issues. When I have these symptoms I now get bowel issues where I have to get to the bathroom right away to have a BM. A few times I did NOT make it in time and went in my pants. This is horrifying. I fear going out anymore.

Then more symptoms have started up with a sensory overall body sensation, sensory shift in how my overall body feels which is a very sick feeling, an overall sick feeling from head to toe where my entire body feels sick, close to death type feeling.

I live a healthy lifestyle, am not overweight. Drink lots of water and eat healthy. I do not smoke not drink alcohol YET my body is sick, head to toe symptoms etc.

Tons of blood work come back negative. MRIs and Cat scans are negative, even blood test called Paraneoplastic test looking for cancer cells in my blood is negative. EMG, Nerve conduction test. EEG'S, ECHO, STRESS tests, I even have a LOOP recorder implanted in my chest to watch what my heart is doing doing these episodes YET heart rhythm is normal-only sometimes a racing heart is shown.

Endocrinologist ran all tests including 24hour urine several times, stool samples etc yet all negative.

Cat scan looked for adrenal tumors etc and only found pockets of inflammation in my intestines yet blood tests for inflammation was negative.

MRIs showed degeneration in cervical and lumbar and thoracic spine with some spine cysts yet nothing concerning and no impingements at all on my spinal cord.

MRI of brain several times was normal except recent MRI of brain last week showed One " nonspecific FLAIR abnormality in Centrum" of brain YET radiologist chalked it up to nothing concerning. No lesions found in brain or spine.

I'm 61 years old so they chalk up neck, Spine and brain issues with aging.

Not one Specialist or Primary care doctors OR many trips to ER can figure out what is wrong. Not ONE doctor over almost two years can figure it out. And many of these doctors are so nonchalant about my suffering. It's unreal how many doctors are so cold hearted about my suffering and many want to blame ALL these progressive symptoms on ANXIETY and try to quickly write me a Rx for anxiety meds.

And now I am on a ONE YEAR wait LIST at MAYO.

I give up.

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It's been 1.8 years of progressive debilitating symptoms yet doctors from neurologists to endocrinologist to cardiologist and gastrologist can not yet, even after dozens of tests. X-rays, blood and urine workups etc, can not figure out what I have. Only thing I know are these symptoms have morphed and episodes have progressed from a few times a month back in Dec 2019 to now almost daily episodes of frightening and debilitating symptoms.

My symptoms started as: pins. Tingling, numbness in my feet and calves along with visual disturbances and racing heart.
With a few months the pins, needles and numbness spread to my hands and face with muscle twitching throughout my body. Every episode starts with heightened visual disturbances and pins, needles and numbness in lower legs and around my mouth and chin area. THE other symptom I now have along with all the other symptoms is bowel issues. When I have these symptoms I now get bowel issues where I have to get to the bathroom right away to have a BM. A few times I did NOT make it in time and went in my pants. This is horrifying. I fear going out anymore.

Then more symptoms have started up with a sensory overall body sensation, sensory shift in how my overall body feels which is a very sick feeling, an overall sick feeling from head to toe where my entire body feels sick, close to death type feeling.

I live a healthy lifestyle, am not overweight. Drink lots of water and eat healthy. I do not smoke not drink alcohol YET my body is sick, head to toe symptoms etc.

Tons of blood work come back negative. MRIs and Cat scans are negative, even blood test called Paraneoplastic test looking for cancer cells in my blood is negative. EMG, Nerve conduction test. EEG'S, ECHO, STRESS tests, I even have a LOOP recorder implanted in my chest to watch what my heart is doing doing these episodes YET heart rhythm is normal-only sometimes a racing heart is shown.

Endocrinologist ran all tests including 24hour urine several times, stool samples etc yet all negative.

Cat scan looked for adrenal tumors etc and only found pockets of inflammation in my intestines yet blood tests for inflammation was negative.

MRIs showed degeneration in cervical and lumbar and thoracic spine with some spine cysts yet nothing concerning and no impingements at all on my spinal cord.

MRI of brain several times was normal except recent MRI of brain last week showed One " nonspecific FLAIR abnormality in Centrum" of brain YET radiologist chalked it up to nothing concerning. No lesions found in brain or spine.

I'm 61 years old so they chalk up neck, Spine and brain issues with aging.

Not one Specialist or Primary care doctors OR many trips to ER can figure out what is wrong. Not ONE doctor over almost two years can figure it out. And many of these doctors are so nonchalant about my suffering. It's unreal how many doctors are so cold hearted about my suffering and many want to blame ALL these progressive symptoms on ANXIETY and try to quickly write me a Rx for anxiety meds.

And now I am on a ONE YEAR wait LIST at MAYO.

I give up.

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@joannemm30809 i so wish i could just reach out and make you better. The problem with AD is that they are so vague and doctors don’t yet know how to add up all the symptoms. Do you live with someone who can keep an eye on you and help you?
I know you have an appointment at Mayo Clinic in 2022, but have you thought of contacting a university medical center?
Will you continue to keep us informed about how you are doing?

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@joannemm30809 i so wish i could just reach out and make you better. The problem with AD is that they are so vague and doctors don’t yet know how to add up all the symptoms. Do you live with someone who can keep an eye on you and help you?
I know you have an appointment at Mayo Clinic in 2022, but have you thought of contacting a university medical center?
Will you continue to keep us informed about how you are doing?

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I will update you if I ever get a diagnosis. So many specialists yet no one truly understands my symptoms.

I am moving next week from Lakeland Florida back to SW Florida in Venice. I will try to find a University that might help but I'm about to give up. Not sure how much longer I can suffer, not be able to live my life etc without some answers, some relief and a diagnosis.

A one year wait to see a doctor at Mayo in Jacksonville FL is insane.

The medical system in America IMO is a failure.

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I will update you if I ever get a diagnosis. So many specialists yet no one truly understands my symptoms.

I am moving next week from Lakeland Florida back to SW Florida in Venice. I will try to find a University that might help but I'm about to give up. Not sure how much longer I can suffer, not be able to live my life etc without some answers, some relief and a diagnosis.

A one year wait to see a doctor at Mayo in Jacksonville FL is insane.

The medical system in America IMO is a failure.

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It seems like everyone is getting so frustrated because of the lack of diagnoses, and care, and long wait lists, and the lack of access to good medical care. So i went looking
I found this list of resources for autoimmune diseases. The list was under Find an Expert. It might be interesting to see what these groups have on their websites!

American College of rheumatology
Autoimmune Association
National Institute of Allergy and Infectious Disease
National Institute of Arthritis and Musculoskeletal and Skin Diseases

Anyone think it’s worth a try?

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Thank you Becky. I hadn’t heard of the Autoimmune Association- https://autoimmune.org/
I wasn’t impressed with their simplistic definition of Sjogren’s. But, I’ll explore a little more.

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