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Rare Disease Frustrating Patient and Doctors

Posted by SusanEllen66 @SusanEllen66, Aug 28, 2022

Rare diseases. There are many people who have many different ones. They come in all shapes, sizes, and don’t discriminate…One thing applies to all though. They are frustrating!
Having a rare, potentially fatal disease that has no cure is frustrating.
I have been trying my hardest since my diagnosis in 2015 to educate myself about my disease. There is no choice but to do it because the healthcare providers are not taught much about the rare ones.
I have no problem teaching my doctors. They have a problem with me because they don’t know what to do with me. Some tend to toss me off and zip out of the the room with a shrug. They are frustrated too.

Now, this disease (Polyarteritis Nodosa) has been damaging more of my arteries and nerves lately. It’s affecting my head, face and vision. My rheumatologist knows what medication is going to help me. The problem is that the last time I was given the Rituxan infusions it caused my lungs to generate inflammation and I wasn’t getting enough oxygen. I don’t know what the answer is today. However, I have a consultation appointment at Mayo Scottsdale coming up this week and I am praying for an answer.
Frustration extends to my family members who are tired of hearing about my adventures. My sister called me a “Project “. Oh well. I am.

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 28, 2022

@SusanEllen66, From one Project to another 🙃 - You need to join The Patient Revolution - https://patientrevolution.org/read

Hoping for less frustration as you continue on your journey of learning and communicating.

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1 reply
SusanEllen66 | @SusanEllen66 | Aug 28, 2022
In reply to @johnbishop "@SusanEllen66, From one Project to another 🙃 - You need to join The Patient Revolution -..." + (show)
@johnbishop

@SusanEllen66, From one Project to another 🙃 - You need to join The Patient Revolution - https://patientrevolution.org/read

Hoping for less frustration as you continue on your journey of learning and communicating.

Jump to this post

Thanks John! Exactly…

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carolc66 | @carolc66 | Sep 11, 2022

Prayer has gotten me through so much fear, frustration, and anger. I have a rare cancer called NET. I am fortunate to be close enough to Sloan Kettering Cancer Center in NY and they are familiar with the type of cancer and there are treatments available.

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1 reply
Valerie | @lacy2 | Sep 11, 2022

......rare diseases, unfamiliar symptoms, ageing; thing is with me once the doctor/n.p. hears about anxiety and depression which I have dealt with on and off for years... they seem to concentrate on that and it's as if they think the physical is 'caused' by mental health - which it possibly could be but not this time around nor my previous cancer, half thyroid and appendix out, and narrow angle glaucoma - blood tests in a few days but they never say what the tests are for etc., so for 2nd time only am taking daughter with me so she can ask....these episodes of not only flushing in face and other body parts which 'BURN' for hours.... I'm having to take photos for proof as sometimes the burning is without pinkness/redness..... I wish everyone the best and although I don't want to find out have a mysterious disease, would rather know and then face it. Take care.....J.

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1 reply
marjou | @marjou | Sep 11, 2022
In reply to @carolc66 "Prayer has gotten me through so much fear, frustration, and anger. I have a rare cancer..." + (show)
@carolc66

Prayer has gotten me through so much fear, frustration, and anger. I have a rare cancer called NET. I am fortunate to be close enough to Sloan Kettering Cancer Center in NY and they are familiar with the type of cancer and there are treatments available.

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@carolc66 Just want to send positivity and prayer your way. Sloan Kettering in NY is a great medical facility as they have helped my mom and 2 sisters.

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carolc66 | @carolc66 | Sep 11, 2022

thank you. Being positive is a big part of it, isn't it?
And, prayer is what I need most.
What brings you to this group?
I want to send you prayers and best wishes too

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sommerreign | @sommerreign | Sep 15, 2022
In reply to @lacy2 "......rare diseases, unfamiliar symptoms, ageing; thing is with me once the doctor/n.p. hears about anxiety and..." + (show)
@lacy2

......rare diseases, unfamiliar symptoms, ageing; thing is with me once the doctor/n.p. hears about anxiety and depression which I have dealt with on and off for years... they seem to concentrate on that and it's as if they think the physical is 'caused' by mental health - which it possibly could be but not this time around nor my previous cancer, half thyroid and appendix out, and narrow angle glaucoma - blood tests in a few days but they never say what the tests are for etc., so for 2nd time only am taking daughter with me so she can ask....these episodes of not only flushing in face and other body parts which 'BURN' for hours.... I'm having to take photos for proof as sometimes the burning is without pinkness/redness..... I wish everyone the best and although I don't want to find out have a mysterious disease, would rather know and then face it. Take care.....J.

Jump to this post

Mayo in Rochester found the answer. I had a foot that burned & was hot & cold & then mottled & painful. A sympathetic block stopped the pain & warmed the foot up within 10 minutes!
Needed one every 6 months but it got me on my feet and working all day once again

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fun2go | @fun2go | Sep 15, 2022

Wow! That's a bundle of issues and I'm hoping you get some good care, medicine, advise, and just plain given a hug. Prayers for you seeking help and good medicine. God bless and amen!

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