Actual diagnosis: multiple autoimmune conditions

Posted by motte98 @motte98, Jun 30 7:32pm

I have always been pretty healthy until Oct 2020, I started having some swallowing issues and all of my testing comes back with markers/partial positive but not definite for 3 autoimmune diseases. MS,Lupus and Sjogrens. I also have stocking glove syndrome and poly neuropathy. How do I find treatment to figure this out?

@motte98 Welcome to Connect.We’re a group of people who share information to help each other with their health journey. We are not medical professionals so we can’t diagnose or prescribe. Autoimmune diseases are known to be difficult to diagnose and many of them have only been “discovered” since 2000. Many are considered rare because so few people have been diagnosed, because the symptoms are so nebulous. I kept getting worse and worse and no one could figure out what was going on. I wasn’t diagnosed until I was admitted to the ER unresponsive. After an MRI which showed lesions on my brain, they still didn’t know. The doctors must have spoken to doctors at the university hospital who told them to give me high dose steroids. My husband took me to the university medical center where a neurologist explained what was happening. I’m telling you this to encourage you to go to a large medical center or university hospital. They are better equipped with researchers to understand the uncommon and rare.
Can you find a medical center in your area?

https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/. This discussion may be of some help

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I’ve had a similar experience, although my first autoimmune disease, Primary Biliary Cholangitis, wasn’t diagnosed until it caused stage 3 liver cirrhosis. A few months after my liver transplant last August, I developed neuropathy and several other symptoms…sore throat, trouble swallowing, tremendous muscle and joint pains, eye pain, fatigue, and more. I was sent to a neurologist, who thought I might have Sjogren’s, as it is sometimes ancillary to PBC. I also have Raynaud Syndrome, which also can come along with PBC and Sjogren’s. The neurologist did a bunch of labs, which indicated Sjogren’s and possibly other things.

I’ve seen a rheumatologist PA twice, lots more labs to reconfirm Sjogren’s and eliminate other diseases. But still no treatment options have been offered. I’m now to see a neuromuscular MD.

Have you seen a rheumatologist? Hang in there, as @becsbuddy says, autoimmune diseases are hard to diagnose and as far as I can tell at least for me, there isn’t a cure. The are some treatments for symptoms. I continue to do research, I follow a strict diet to try to limit inflammation, and I walk 2-3 miles each day.

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Hello @motte98

I would just encourage you as Becky (@becsbuddy) did to go to a multidisciplinary health care center such as a university medical school or a facility like Mayo Clinic. These health care centers are research-oriented and are the best when it comes to sorting out complex health issues.

It sounds like you have had a lot of tests and probably seen a number of doctors. I'm wondering, however, if you've ever been examined by a laryngologist? This type of ENT doctor can diagnose swallowing problems that might be connected to the vocal cords. They put a small tube with a camera through your nose and are able to look at your vocal cords. (I've had many of these tests for a swallowing problem and they really are not as uncomfortable as they sound.)

I have Parkinson's and some other disorders and found out that I have a paralyzed left vocal fold. It has been partially corrected with a simple surgical procedure.

Speech therapists are also good at helping you to correct swallowing problems. Have you been referred to a speech therapist?

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@hopeful33250

Hello @motte98

I would just encourage you as Becky (@becsbuddy) did to go to a multidisciplinary health care center such as a university medical school or a facility like Mayo Clinic. These health care centers are research-oriented and are the best when it comes to sorting out complex health issues.

It sounds like you have had a lot of tests and probably seen a number of doctors. I'm wondering, however, if you've ever been examined by a laryngologist? This type of ENT doctor can diagnose swallowing problems that might be connected to the vocal cords. They put a small tube with a camera through your nose and are able to look at your vocal cords. (I've had many of these tests for a swallowing problem and they really are not as uncomfortable as they sound.)

I have Parkinson's and some other disorders and found out that I have a paralyzed left vocal fold. It has been partially corrected with a simple surgical procedure.

Speech therapists are also good at helping you to correct swallowing problems. Have you been referred to a speech therapist?

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I have been to an ENT they recently performed an EGD and previously 2 barium swallows,5 nasal scopes, an LP, multiple xrays as my bones feel like they are shattering, numerous blood panels,MRI, CT scans showing enlarged cervical lymph nodes also have dysphagia, felinization of the esophagus mucosa, vocal cord/ larynx disfunction, livedo reticularis and Livedo Racemosa, severe photo phobia,peripheral neuropathy, poly neuropathy and tremors with anesthesia. I have been seeing providers at the U of U hospital in Salt Lake city. There are days that I literally can't walk due to the health issues I have. I constantly get told it will get better. Multiple meds have made things drastically worse I am currentlyona thickened luquid diet of honey consistency. Not sure where to turn?

REPLY
@becsbuddy

@motte98 Welcome to Connect.We’re a group of people who share information to help each other with their health journey. We are not medical professionals so we can’t diagnose or prescribe. Autoimmune diseases are known to be difficult to diagnose and many of them have only been “discovered” since 2000. Many are considered rare because so few people have been diagnosed, because the symptoms are so nebulous. I kept getting worse and worse and no one could figure out what was going on. I wasn’t diagnosed until I was admitted to the ER unresponsive. After an MRI which showed lesions on my brain, they still didn’t know. The doctors must have spoken to doctors at the university hospital who told them to give me high dose steroids. My husband took me to the university medical center where a neurologist explained what was happening. I’m telling you this to encourage you to go to a large medical center or university hospital. They are better equipped with researchers to understand the uncommon and rare.
Can you find a medical center in your area?

https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/. This discussion may be of some help

Jump to this post

Thank you

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@motte98

I have been to an ENT they recently performed an EGD and previously 2 barium swallows,5 nasal scopes, an LP, multiple xrays as my bones feel like they are shattering, numerous blood panels,MRI, CT scans showing enlarged cervical lymph nodes also have dysphagia, felinization of the esophagus mucosa, vocal cord/ larynx disfunction, livedo reticularis and Livedo Racemosa, severe photo phobia,peripheral neuropathy, poly neuropathy and tremors with anesthesia. I have been seeing providers at the U of U hospital in Salt Lake city. There are days that I literally can't walk due to the health issues I have. I constantly get told it will get better. Multiple meds have made things drastically worse I am currentlyona thickened luquid diet of honey consistency. Not sure where to turn?

Jump to this post

The only suggestion I would have at this point is to try to get an appointment at Mayo Clinic, @motte98. Here is appointment information at Mayo's three facilities, http://mayocl.in/1mtmR63.

Do you think this is a possibility?

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