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Anyone out there living with primary autoimmune myelofibrosis?
Autoimmune Diseases | Last Active: Mar 17 10:43am | Replies (11)Comment receiving replies
I have a very rare autoimmune disease where my autoimmune immune system attacks my red blood cells. I’m chronically anemic and require blood transfusions almost every week.I was diagnosed at Mayo and completed a treatment with a high success rate for remission… except it looks like it didn’t work for me.I’m feeling very discouraged, alone and depressed. In addition to this, I also have a heart condition called Long QT Syndrome. It’s a heart rhythm issue that requires a defibrillator. Plus, I have bipolar I disorder. Does anybody else ever feel like they are just done?
Replies to "I have a very rare autoimmune disease where my autoimmune immune system attacks my red blood..."
@meredithes, I have added your discussion about primary autoimmune myelofibrosis to the Blood Cancers & Disorders support group as well as the Autoimmune Disorders group.
Managing multiple chronic and complex conditions is fatiguing and discouraging, especially if something is not responding well to treatment. I'm glad that you are in good hands at Mayo Clinic.
What are the next steps for treatment the myelofibrosis?
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Hi Meredithes,
How awful for you to have all of these things going wrong with you! That must be very hard to deal with. I'm so sorry that things aren't working out right. Gee, with your immune problems and heart issue and trying to deal with being bipolar it's no wonder you feel discouraged, alone and depressed.
I can understand feeling alone and depressed because my husband of 30 years died in 2024 and now it's just me all by myself. I'm going to be 80 in May so most of our friends and family are all up in Heaven.
It sounds like you are doing the right things by going to the Mayo Clinic and getting your blood transfusions etc. What do your doctors say about the results? Perhaps you might need to look for some new doctors with more experience in your particular field.
The other thing you can do is give all your problems up to God. Just talk to him like he's your best friend and he is! After all, God made you and he can fix you! Talk to God tonight before you go to bed and you'll sleep better. I know it works for me. I'll say a prayer for you also.
Don't feel alone. I'd love to talk to you and see how things are going. I have a lot of time since my husband died and I could use a new friend.
I wish you the best.
PML