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Anyone out there living with primary autoimmune myelofibrosis?
I was finally diagnosed with autoimmune myelofibrosis by the Mayo Clinic, which is a truly amazing place to get diagnosis and treatment. Doctors in my hometown could not come up with anything for many many months so being accepted by the Mayo Clinic was a God send. Fortunately, my disease is not the cancerous type of myelofibrosis. The doctor I see at Mayo told me I am only the 3rd patient she has treated with this disease and the Mayo Clinic overall has only seen 22 cases. Apparently the criteria for having autoimmune myelofibrosis is being a woman in your 40s. I had just turned 40 the year I was diagnosed so happy birthday to me *sarcasm intended*.
That is all well and good, but the effects of having this are so debilitating. Maybe I'm just a wuss but being constantly out of breathe completing ordinary tasks, feeling dizzy at times if my hemoglobin gets low enough (which it does) and having to go in and get blood transfusions every week or two due to the low hemoglobin is just exhausting. I am also a very hard stick and the vein finder often comes out. I usually get poked 3-4x by 2-3 different nurses before a good vein is found.
I also have a heart rhythm condition called Long QT Syndrome which I found out about after surviving 3 cardiac arrests at the age of 22. This of course caused an anoxic brain injury, which took years to recover from. Just when I thought my life could begin again, I got diagnosed with bipolar I disorder which meant playing what I like to call "the medication game." Due to Long QT Syndrome, there are so many medications that I cannot take which only complicated the matter.
I am doing a lot of complaining, but at what point do you just want to say enough is enough?! On the other side, I am aware and know there are so many people out there who are struggling with medical conditions so much worse than mine and I applaud you and wish you the very very best
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@meredithes Welcome to Mayo Clinic Connect! You will soon be contacted, via this site, by other members with helpful tips and suggestions. You were diagnosed at Mayo Clinic-that’s great! Have you thought about contacting the department where you were diagnosed and asking for help? Or contact the doctor directly through the portal? She ought to know that you are frequently out of breath, feel dizzy, and the blood transfusions don’t seem to work very well. She may have some answers.
Can you send a message through the portal tomorrow?
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2 Reactions@becsbuddy I did indeed message my doctor and will be coming back up to Mayo next week for treatment.
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3 Reactions@meredithes That’s just great that you got an appointment so quickly! Be sure to let me know what happens!
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1 Reaction@becsbuddy I sent them a message about my symptoms in mid July. I’m transfusion dependent right now so seeing me ASAP was definitely a thing. I’m grateful they had an opening so quickly myself!
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1 ReactionI 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?
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3 ReactionsHi 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
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1 Reaction@pml this is very true. i too just ask God and trust in Him to help me in every situation and He never fails. one thing I might suggest because I know someone who was put on wrong medication for bipolar, perhaps ask them to look at the medication. God bless.
@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?
@pml I’m in Oklahoma so I’m meeting with my Mayo doctor via telemedicine tomorrow to see what to do. I’ve been able to get all my treatment locally but I’m afraid I’ll need to uproot to come to MN.
@meredithes
I am very sorry to hear what you are dealing with and wish you the very best going forward. I am wondering if the Phoenix AZ Mayo is any closer and/or deal with your condition?