What medications do they give?

Posted by chicago13 @chicago13, 1 day ago

I was recently diagnosed with auto immune disease that has to do with my blood. I am scared and feel like I'm gonna die? I'm always in pain and stressed out.my feet hurt my hands and nerve pain. What is gonna happen to me? Would I qualify for disability?

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Welcome to Connect, @chicago13. I promise you’re not alone with being terrified when you get a diagnosis that is life changing. Most of us in this blood cancer group have faced similar feelings at one point. But what we’ve also found is that most of our diseases can be helped through treatments and we go on to lead pretty normal lives.

If you wouldn’t mind sharing a little more about your diagnosis, I can help connect you with other members who are in the same situation.
What is the auto-immune disease in your diagnosis? How was this linked to your blood? What has your doctor talked about by way of treatment for you?

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Cryoglobulinemia. I have had hepatitis C in the past but was given the Mavyret medication and it cleared it. But supposedly could be coming back. And need to see a kidney doctor. So I go back in like 3 weeks and pray it’s not anything (a mistake), he said it is a very rare disease and has 3 stages. They have done blood work and blood work cause at first thought I had rheumatoid arthritis. So I’m not sure. I sometimes don’t even want to go back to doctors. I recently lost my son who had just turned 30 so the year has been bad all the way around. I’m scared, angry and mad. But thank you for your response.

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Cryoglobulinemia. I have had hepatitis C in the past but was given the Mavyret medication and it cleared it. But supposedly could be coming back. And need to see a kidney doctor. So I go back in like 3 weeks and pray it’s not anything (a mistake), he said it is a very rare disease and has 3 stages. They have done blood work and blood work cause at first thought I had rheumatoid arthritis. So I’m not sure. I sometimes don’t even want to go back to doctors. I recently lost my son who had just turned 30 so the year has been bad all the way around. I’m scared, angry and mad. But thank you for your response.

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@chicago13, I’m so sorry to read about the recent loss of your son. How unimaginably devastating this has to be and I can’t help but wonder if your current health issues aren’t related. My heart goes out to you with all the sadness, anger, fear and stress you’re experiencing right now.
One of the special things about Connect is that we’re very supportive here. Sometimes it can be helpful to speak with members who are coping with a similar diagnosis. We do have members with cryoglobulinemia. So I want to connect you with those members first.
Here is one of many discussions about cryoglobulinemia.
~Cryoglobulinemia: Want to connect
https://connect.mayoclinic.org/discussion/cryoglobenemia/
Others were found in this search:
https://connect.mayoclinic.org/search/
A little more information for you:
From Mayo Clinic:
https://connect.mayoclinic.org/discussion/cryoglobenemia/
From Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/13204-cryoglobulinemia
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Since this is such an emotional loss for you, at the same time as your own health issues, you might find some comfort with joining our Grief Support Group. I know it can’t replace your son but being able to share your story, his story and talk to others who have experienced a significant loss can help you process these emotions and find some footing when you feel lost.
One such conversation is this one:
I am trying to deal with the loss of our only child. https://connect.mayoclinic.org/discussion/i-am-trying-to-deal-with-the-loss-of-our-only-child-richard/
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This is a link to our Loss &Grief support group: https://connect.mayoclinic.org/group/loss-grief/
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I encourage you to follow through with your doctor, with the consultation to find out for certain what the diagnosis is. There are varying treatments for Cryoglobulinemia depending on the type. What type of specialist are you working with?

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