Where to turn next

Posted by maui6698 @maui6698, Wed, Sep 18 2:59pm

Hello everyone, I really need some advice or direction and prayers. At this point I’m not sure where to go or what dr. to see next. All I’m certain of is that something isn’t right and that I don’t feel well. A little back story I’ve been feeling unwell really since February maybe before that. But its hard to determine as I was recovering from a broken kneecap. I am hardly able to function at this point. It’s a struggle to make it to work, when I get home all I want to do is go to bed. Im the most exhausted I’ve ever been in my entire life. I just turned 41 last month and I feel like im wasting precious time with my family. I was recently diagnosed by my rheumatologist that I have spondyloarthropathy and trigeminal neuralgia. But these symptoms that I’m having aren’t addressed by those two diagnoses. My gp is useless. I have intense night sweats, I’m cold all day (when I live in Texas) I’m losing weight, not hungry I do not eat breakfast hardly have lunch and will eat a bit of dinner with my family. My skin looks funky, its pale, I can see all of my veins now even on my eyelids. I’m dizzy most of the time. Bruise easily, and have some odd spots that appear out of nowhere. Ive had a cough since august I cant get rid of. These are just a few of my daily issues. I’ve been to my gp, to a gi dr and now to the rheumatologist. I just know in my gut something is off I can tell, but I honestly don’t know where to turn next.

I just read your post and wanted to thank you for sharing your story. I don't have a suggestion right now but I will offer up my prayers. This forum will hear you. Sending you an angel . Blessings

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@georgette12

I just read your post and wanted to thank you for sharing your story. I don't have a suggestion right now but I will offer up my prayers. This forum will hear you. Sending you an angel . Blessings

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Thank you so very much!

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Hello @maui6698
Welcome to Mayo Connect! As you know, Connect cannot make diagnoses because we are not medical professionals, however, we can support you as you seek help. Many of your symptoms do sound like an auto-immune disorder of one type or another. Has your rheumatologist tested you for any auto-immune disorders? You might also seek the consult of an endocrinologist. Endocrinologists are specially trained M.D.s who are exceptionally good at putting the puzzle pieces of various symptoms and getting an understanding of what might be going on. I have had a hard-to-diagnose and/or rare disorder and I know how challenging it is to have health problems without answers, so keep advocating for yourself and keep seeking answers.

Just a thought: Has anyone in your family had a history of this type of problem? Are there any rare disorders in your family?

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Hi, @maui6698 and welcome to Connect. I know the frustration of having symptoms and not getting a diagnosis. I had multiple, seemingly unrelated symptoms – episodes of confusion and irrational behavior, shaky hands, being cold all of the time, fatigue, and declining platelet counts, fluid retention in my feet, but it took almost a year and a half for a neurologist to add them up! I was sent to a neurologist because they thought the confusion episodes were neurological. He was the doctor who suggested liver problems and he was right. I had non-alcoholic cirrhosis from fatty liver and eventually had a liver transplant.

Sometimes it takes an extremely talented diagnostician to add everything up. Have you gone to a major medical center? You are more apt to find help there simply because they see so much more. I know I will never again wait before heading to Boston (I’m in southern NH) if a diagnosis is not made in a very reasonable amount of time here. I think the doctors here were not putting all of my symptoms together. Have you ever seen the TV show “House”? He was an exceptional diagnostician. When I went so long with no diagnosis I was asking where House was when I needed him!
JK

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@maui6698 Going to an Endocrinologist is the first suggestion I had as well also I would think about seeing a pulmonologist for that cough since you have had it so long . You should have your blood checked also . I hope you get some answers for you are suffering I can tell that .

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@hopeful33250

Hello @maui6698
Welcome to Mayo Connect! As you know, Connect cannot make diagnoses because we are not medical professionals, however, we can support you as you seek help. Many of your symptoms do sound like an auto-immune disorder of one type or another. Has your rheumatologist tested you for any auto-immune disorders? You might also seek the consult of an endocrinologist. Endocrinologists are specially trained M.D.s who are exceptionally good at putting the puzzle pieces of various symptoms and getting an understanding of what might be going on. I have had a hard-to-diagnose and/or rare disorder and I know how challenging it is to have health problems without answers, so keep advocating for yourself and keep seeking answers.

Just a thought: Has anyone in your family had a history of this type of problem? Are there any rare disorders in your family?

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my next stop was to see an endocrinologist actually. My mom and my brother both passed away at an early age and we didn't obtain much medical info from them they never went to see dr's My dad has never had anything like this before.

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@contentandwell

Hi, @maui6698 and welcome to Connect. I know the frustration of having symptoms and not getting a diagnosis. I had multiple, seemingly unrelated symptoms – episodes of confusion and irrational behavior, shaky hands, being cold all of the time, fatigue, and declining platelet counts, fluid retention in my feet, but it took almost a year and a half for a neurologist to add them up! I was sent to a neurologist because they thought the confusion episodes were neurological. He was the doctor who suggested liver problems and he was right. I had non-alcoholic cirrhosis from fatty liver and eventually had a liver transplant.

Sometimes it takes an extremely talented diagnostician to add everything up. Have you gone to a major medical center? You are more apt to find help there simply because they see so much more. I know I will never again wait before heading to Boston (I’m in southern NH) if a diagnosis is not made in a very reasonable amount of time here. I think the doctors here were not putting all of my symptoms together. Have you ever seen the TV show “House”? He was an exceptional diagnostician. When I went so long with no diagnosis I was asking where House was when I needed him!
JK

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this is exactly what i need is an exceptional diagnostician!

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Hi @maui6698 I thought it would be helpful to share some other discussions on Connect where members are discussing similar conditions or symptoms that you mentioned.

Here is a discussion on Trigenimal Neuralgia: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

And discussions on some different spondyloarthropathies such as:

Ankylosing Spondilitis: https://connect.mayoclinic.org/discussion/diagnosed-with-ankylosing-spondylitis/
Psoriatic Arthritis: https://connect.mayoclinic.org/discussion/psoriatic-arthritis-257d5c/

You mentioned that your symptoms don’t match the diagnoses your rheumatologist gave. Did they explain to you how they landed on these diagnoses?

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@ethanmcconkey

Hi @maui6698 I thought it would be helpful to share some other discussions on Connect where members are discussing similar conditions or symptoms that you mentioned.

Here is a discussion on Trigenimal Neuralgia: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

And discussions on some different spondyloarthropathies such as:

Ankylosing Spondilitis: https://connect.mayoclinic.org/discussion/diagnosed-with-ankylosing-spondylitis/
Psoriatic Arthritis: https://connect.mayoclinic.org/discussion/psoriatic-arthritis-257d5c/

You mentioned that your symptoms don’t match the diagnoses your rheumatologist gave. Did they explain to you how they landed on these diagnoses?

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she diagnosed me based on my bloodwork elevation rate and esr etc.

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Hello @maui6698

When you see an endocrinologist (or another specialist) you might find the following post helpful. It explains how to approach a new specialist. The information to bring with you as well as the information to discuss with the doctor. It would be advisable to bring with you a list of your symptoms, etc. Here is the link to this post,
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

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@hopeful33250

Hello @maui6698

When you see an endocrinologist (or another specialist) you might find the following post helpful. It explains how to approach a new specialist. The information to bring with you as well as the information to discuss with the doctor. It would be advisable to bring with you a list of your symptoms, etc. Here is the link to this post,
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

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thank you this will be so helpful! i will use this forsure.

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Perhaps this has already been considered, but has your B12 level been checked?

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Good question. Yes, Vitamin D checked !

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Told to take Vitamin D3?

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@maui6698 Hello, I’ve been wondering if you were able to see an endocrinologist as you had hoped? What have you been able to find out? I certainly hope you get some answers soon!

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