Ok, been over 3 years now, getting "oh you have this" "ooops, no you have this" etc. etc. etc.
NOW......
They are back to what they thought the very very very very first time which was Rheumatoid Arthritis but a mutated "new" version.
Thinking that it attacks my joints and has expanded to my muscles, blood and skin.
All revolving around inflammation.
But hold on to your hats.... that's not all....
I have been telling them forever that the pain isn't the joints. Come to find out (after 3 years) i had regular pain in the bone over the entire body arthritis and BOY is the winter hitting that puppy hard.
My liver hates my ultram now so i can't take it. I'm on something else (forgot the name) and it doesn't work as good on me :( vicodin or something like that.
Anyway, no actual diagnosis, think they feel better saying ra so they don't have to look anymore.
Any my body rejected every and all normal treatments so now they have contacted the humira company for me to get free medication (i have a needle phobia so my hubby will do it until i get an injecter).
Anyway, that's my story (for now, until they change it).
It's a pain in my body and butt to have this disease. My immune system is soooooooooo shot that it rejects things like corn and milk from digesting right, i can't be around select chemicals either.
It's a pain, i just hope himura helps and that i can get it. Otherwise i have nothing left without biologics.
thanks for listening.
P.S.
Forgot to mention, after all of their taking of their time these past 3 years, my finger is now deformed (ugly knuckle) my elbow doesn't open all the way anymore, my left wrist no longer bends backwords and under my knees has had the bown grow out puffy.
Why couldn't they have cared enough to fix me back when this all started?
Not to make light of the subject, but your symptoms and misdiagnoses sound like something you would see on that tv show House.
I love that show lol. I see sooooooo many episodes with symptoms like i have and then they come out with something weird causing it. My husband and I just laugh and laugh at the thought of me catching something in a 3rd world country etc. :)
I own a cane like his lol. I found a website online that sells it :) I'm pathetic lol
But thank you for the kind words. I am so happy internet exists, i almost have all my holiday shopping done and i didn't have to leave home to do it.
I am still on prednisone 5mg, meloxicam (mobic) and pain killers.
I think i will up the pred this winter, too much pain with the cold.
My husband and I *love* that show!!! LOL We're patiently wanting for it to come on tonight. On one show they diagnosed a girl with JRA (ended up being something else) but I had my nose pressed against that tv screen. It just blew me away and I thought we were going to get some much needed RA attention!
I'm sorry I can't offer much doctor-y type help, but if you need the virtual shoulder to lean on, I'm here for ya!!
A mutated new version? Is that something going around? Or did your RA infact mutate and worsen? I seems that my RA has been mutating it's self . Do not know if it is in my blood i do have a skin thing going on. See specialist jan 15th. I do have some vascular stuff and my blood work was all over the place. I some times feel that it is in my bones or even it feels like the muscle is tearing off the bones. Some of my muscles look that way actually. I do swell in my muscles maybe worse than in my joints. Still you sound worse than me. And bless your heart. My body hates all medicine. Vicoden is all i have left to take i broke out in a rash last flare on the ultram. If i give the vicoden a chance and let it build up for a few days it works better for me than the ultram. It is harder on your stomache and more mental fog. But after i have been on it for a few days my stomache doesn't notice because it kills the stomache pain. I am not saying that is good but that is what i have to deal with for pain relieve. And eat something first always. That is all i know about vicoden. Good luck with the Humara. Sorry for all you are going threw.Bubbagump, that truly sucketh, as Shakespeare would say. I'm intrigued,I am sorry, Bubbagump. I feel for you, I truly do. I REALLY hope the Humira works out for ya. We needle phobians need to stick (no pun intended) together. What helped me with getting the Humira shot was my hubby giving it to me and me & him joking around and trying to psych me up for the BIG (little) prick.
Please keep us posted on your mutated RA. Got a few of us wondering about it & hoping the best for you now. Bubbagump, the migrating RA theory is fascinating. I have to say your symptoms sound very much like mine and some others who have been diagnosed with FM as well as an undifferentiated type of AI disease. Frustrating, isn't it? Don't you just want to know once and for all exactly what is going on? The migration sounds like another confusing bit to add to the mix. I hope you get some quick answers to help you and that you feel better soon. Babbagump, (why do I crave a shrimp salad?!), like other I am very interested in [quote]a mutated "new" version[/quote]of RA.
Can you provide us with some of the details of the mutation? Is the mutation biological or genetic or general.
[quote=Gimpy-A-Go-Go]your digestive system could have more to do with your mutated RA than anyone imagines.[/quote] I immediately flashed on our recent conversation re: olive oil/lemon drink, as well.
I hope everyone is having a comfortable day.
Con brio. Happ
Sorry for the delay, bad flair, had to up my pred to get to the computer :)
As for mutated RA, I think that is their way of wanted to just treat me for RA.
My Rhummy is one of the ones that believes it is based on mutated DNA which most people have today. Mutated DNA has been showing over and over to be something that causes things like arthritis etc.
She thinks that since i have all the RA symptoms, but not enough to give me lupus, chrones etc. that it must be RA. She has checked my heart, my lungs, liver and kidneys, i have been checked for all sorts of diseases from hepititus to lupus and after tons of tests for 3 years, they still can only find rheumatoid arthritis.
They checked my bones, they are fine except the Ra has mutated my finger, wrist and an elbow, the others might be ok enough to be concidered just fine.
So, all that they see as being left now is RA, RA and RA. I know for a fact that my stomach is involved, but it is stomach inflammation that causes things to not digest properly which makes the clay stools that was thought to be celiac disease at one point.
I kept getting what my gynacologist said was reoccuring bacterial vaginosis but it was just caused by inflammation of the uterus.
I have inflammation of muscles and joints, but they don't see blood vestle swelling.
So, they think that due to time and changes and how body dna is constantly changing due to chemicals and change of life, they think what i have is a mutated version of RA.
This makes total sense to me.
I have met so many fastenating people on the internet who have RA but have so many symptoms like me or things like constant nose bleeds, ear swelling, swollen lungs etc. with no reason for it.
If you look at everyone, they all have different RA, nobody is the same, so why can't mine be the next generation?
I belive my doctor. I just hope she finds the proper way to fix me.
God bless you all and I hope you have a wonderful holiday season.