Been 2 years now, with no answer and I am going CRAZY.
This is how it has gone these past 2 years.......
1) you have RA and Osteo
2) ok, you have RA and lupus
3) ok, you have RA only
4) ok, you have RA and intrinsic Asthma
5) Latest one: You don't have RA, just the factor, we don't believe you have Intrinsic Asthma either. Let's get this in order.
So..... Now they are getting my x-rays from family doctor on my bones, getting all tests from them, my old family doctor, my old rhummy doctor etc. and then will be looking for testing.
She "now" believes I have some sort of blood or bone disease or infection.
What's going to happen next? They say "oops" you had cancer all this time, now you will die next week?
I thought I finally had answers with RA and breathing, but now the meds for my asthma are hurting more than helping by building up too much inflammation in my tubes so i had to cut back 1/2 of it to one powder inhaler a day.
My rhummy thinks the bronchitis and asthma i have are side effects of whatever it is that is hurting me. She also said i have an RA factor but there are tons of reasons that are "not" RA for having it. She also mentioned children can have a factor if parents have Ra and never get RA themselves, my dad has RA.
So..... next on her list if CAT or KAT (whatever) scan, more blood testing etc. I just pray that one day it helps.
She is also worried that the only drug that helps is prednisone which can hurt my bones. And if i have a bone disease, she said it could make things sooooo much worse quickly for my bones so she wants to hurry this along.
She is currently talking with the "free" hospital for scanning my cat being that i don't have insurance. So this could take a while since they have their own doctors and odn't like outsiders. Their rhummy is more than 3hrs away which is why i pay for the local one, but their hospital is 15min down the road.
I'm going buggy. I am so tired of hearing "we finally found it" and then "oops nope".
She did state that they have to put you on ra meds if you have a factor and go from there first. If the symptoms match and the drugs seem to work, then they go with it. But I reject everything and thought something was wrong with me. But she told me that if I don't have RA, my body will reject the meds.
So, I wait.
Thanks for listening, I am just going nuts. It's been 2 years, they keep saying i have something when I don't. AT this point, I want to find something, doesn't matter what since i have it anyway.
Thanks again for listening.
I sorry, BubbaGump. I do not have anything to say, except I sorry & huggs.
I can only imagine your frustration. Don't give up.
Poor bubbagump, that must be beyond frustrating, don't give up.That 'waiting' thing again!!! It seems a very common FRUSTRATING part of getting a dx.
2 years! You poor thing. I do feel for you - not that that helps. My 7yo daughter has been through 1yeart of constant sickness and tests and hospitals and NO diagnosis! (not that that helps you either - but I know the frustration!)
I know what you mean about wanting a diagnosis no matter what. We have felt like that too with my daughter. she had her bone marrow tested for bone disease, cancer etc -- and ALL CLEAR - THANK GOD.
Sometimes we thought (god forbid!) - if it is cancer at least we can get on with treatment and a possible CURE to make her better. How stupid! God bless all people who suffer cancer - no disrespect was intended it was just that well, if it is something the doctors know and understand then they can at least try to treat it - right?
I hope noone hates me after typing that. The big "C" is hideous and no one should heve to suffer it, and I have the utmost respect for all who do- but just trying to let you know we understand your desparation for a dx - as parents, not as the sufferer. (and no we don't actually want it to be a disease as horrible as that - as neither do you!)
So far the only drug helping the 'most' for Maddi is also pred - but yes, she is growing and we try to steer clear of it if we can - (I don't think we can for much longer).
Maddis tests find 'things' but nothing to discover what it actually is. And yes it is really scary -that fear of "what if they missed something?".
So hang in there and stay really strong. We are gong nuts here too, and I don't have the condition myself, so I can only imagine what it is like for you.
I hope they sort you out soon. try and stay positive - and keep posting here - it really does help!
Sorry you are having to go through this. I hope you get something definite soon.
Take care
Hugs
How frustrating this must be for you. Hope you get some answers soon.
Bubba - I TOTALLY UNDERSTAND - I finally realized I had to be my own doctor, take the best stab at it I could, and man the torpoedoes myself. Hang in there, it will break free at some point for you.Hi Bubba, oh how awful. Is their some sort of 'evaluation' people go to who don't know what they have? I've never heard of anything so frustrating. Please, let us hear how you are doing, we'll be willing to listen if you feel like posting. So dang sorry about this! Lynda
When you say you reject the meds, do you mean they don't work for you? I've asked my rheumy why we can't seem to find drugs that work for me, he says I still have RA and we have to keep trying.
Hope this gets worked out soon
It is horrible. And the odd part is "only" drugs for RA do that to me. I have been on a million different things for other stuff in the past and they don't do that, so it confuses me.
And don't get me wrong, I'm not saying that I "want" cancer, i just want to know that if it is, tell me now and at least it might be treatable. Instead of waiting and waiting and waiting and then die of something only to have them say later "oops, so that's what it was, my bad".
I have had this since a child. And will let everyone know "if" they finally find what it is. My sed rate is through the roof, so now she has to find out just where the swelling really is, in my blood or bones or both. She just knows after several visits that my joints don't swell themselves. (things i have told her all along).
But I thank god for prednisone. I would rather replace knee caps here and there through life than live one more day in the pain i was. Without pred, no pain killer works enough, nothing can take swelling down enough so i can't even get a shoe on, literally elephant leg, it is just so very very horrible. At least i can live now with pred and worry about the future in the future.
I am very sorry to hear about your daughter. Like i said, i have had tihs my whole life, i was told growing pains, asthma etc. as a child and now I am told they are side effects of what i really have which is something they don't know. So keep getting her help, make sure she doesn't get addicted to pain killers and please make sure she has something like a pain killer or prednisone when it is really bad because it can be pain you will never be able to imagine, along the lines of just breaking your leg, with ra and whatever i have, going on 24hrs a day. It's scarry for adults and children.
God bless you all and i wish you well.
[QUOTE=bubbagump]My body rejects my meds. Instead of getting rid of inflammation, my body swells up. I get so bad that i can get stuck in bed. And when I say stuck, I mean that i can't roll over, can't sit up (sound like a dog lol), can't walk on my own 3 feet to bathroom without support etc.
[/QUOTE]
Hey! that sounded like me when MTX decided to "stop" working for me after 4 months. But it was MTX so far that has made me like that.