First an Introduction

Hello, I just found this group. I'm so glad I did. I hate to "complain" but there will be some of that so be warned!

I have been married for 25 years. we have 6 children, 1 grand-daughter and another on the way. My husband has Aortic valve insufficiency and will need surgery at some point. He also has bipolar well controlled at this point with medication. my 18 year old son has potentially fatal form of epilepsy, where his brain does not reset after seizures and must be put into a coma each time. it is not 100% that he will come out of the coma each time so it is very scary. so far he's had to be in the Neuro ICU every March for the last 3 years. Drs see nothing special that it is always march??

now me.
I have been having health issues for many years. For the last 5 years pain in my lower back and hips has been intense. My kids have to tie my shoes for me!

I went to the dr. since my ANA and sed rates were high they sent me to a Rheumy. She was nasty to me. maybe you just bump your hips and bruised them? And they hurt for years?? maybe you keep doing it? grrrrrrrrrrrr

The xray showed nothing but she would not do an MRI - She said it wasn't worth the expense. (I'm on medicaid) after a few more years of suffering and more and more symptoms kept popping up, I went to a new Dr. she ran the MRI - guess what! I have Myelofibrosis. this is a disease of the bone marrow. the marrow dies and you can not make enough blood cells. this is a fatal disease when it is primary. the prognosis is 3 - 11 years after diagnosis.

One ray of twisted hope is that this disease is secondary to an autoimmune disease. it is very rare, but can be associated with Lupus. Lupus matches all of my symptoms that are not related to the myelofibrosis.

I am waiting now for another set of blood tests to confirm. I have the malar rash, severe fatigue, pain in joints, possibly pericarditis, and fevers. my blood tests from 6 months ago showed an extremely high ana, and crp. sed rate is elevated and so on. Also my mother has rheumatoid arthritis - lupus overlap.

I had a flare or maybe 2 flares right after each other. I have been in bed most of the time since May. I am just now feeling better as I have been put on my 1st course of prednisone. no bad effects yet. this is day 7 of the 15 day course. The only symptoms I have now are heart pounding on light activity and that gets me tired (not the horrible fatigue though). and my hips still hurt. so this is me. I want just to lay my head on a shoulder of someone who understands.

thank you all for being here.

M

Hello M,

 

We're glad you found us too.  Sounds like you have way too much on your plate.  I'm sorry you're dealing with so much. 

 

Don't you want to go back to that first rheumy and slap her with a negligance lawsuit!  Holy mackeral that is brutal.  I'm so glad you found a rheumy who took you seriously.  Let's hope that your treatment will work quickly and your lupus diagnosis will come soon too.

 

Please keep us posted on your blood work.  If you have any questions or just need to vent, we're here for you,

 

Ginny

thank you all for your kind words of support. just what I needed. I will indeed keep you all up on my info. It is enough tonight that I had virtual hugs!

M.

Marie, as far as using your name, it's completely fine to use your first name - a lot of people here do that. We just discourage people from using their entire first and last names for your own protection from spammers, etc. I think what you are experiencing on your prednisone taper is fairly normal. The higher doses help you feel good, but as you taper, symptoms gradually rear their ugly head again. My advice to you is to call your rheumy if your symptoms start getting too bad again. Tell your doc what dose you felt good at and how you are feeling as you taper. The doc can then decide if any changes need to be made to your taper. Tapering can be very tricky. There's nothing easy about dealing with this disease. Keep us posted on how things are going.