The Waiting Game | Arthritis Information

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Hi All

 I Think I'll be here for a while WAITING.LOL

 Pos RF, pos Anti-ccp,  w/ no dx.

Went to the rheummy today and was told I have some sort of Autoimmune disease but what we don't know what.

I will see him again in three months. The not knowing is driving me crazy but it's time for me to move on and just wait for more symptms.

Kathy

kat34138847.6055555556

I KNOW HOW YOU FEEL! I've been dinking around with this & that for 2.5 months now - think it's RA, well maybe not, well try this - will do this test .. NOW... they find the muscle enzyme in my bloodwork is elevated and I've got to have a muscle test where they insert needles...  Rhuemy is looking for  myositis, an autoimmune muscle disease - while I have some of the symptoms - I have more of the RA and I'm SO FRUSTRATED!

I'm heading into a depression, I don't feel good, tho the non steriod meds I'm on have DEFINETELY taken the edge off - the only tears I cry lately are frustration ones and not so much pain. 

I'm irritable, depressed - which causes me to emotionally eat - ARGH!!!!

Thanks for letting me vent....

 

  

Your welcome . I didn't go to work yesterday because I was so depressed about my apt today. I just wanted to curl up in bed.

 Hope We both feel better soon and have so real answers soon.

Kathy

I hope you guys feel better soon too. it can be very
discouraging when you are waiting to get a clear
diagnosis. Hang in there.   

hurry up - and wait.

I wish you a speedy diagnosis......... I know all too well how long it takes to get answers. 

 

woobieAny idea why you have to wait so long before the next appointment? Are they doing anything for you other than NSAIDs? That seems like a long time if they're pretty sure it's an auto-immune disease. I hope they figure it out quickly and do something for you.

I feel like an old woman telling you this, but after years and years of going through exactly what you are going through...many, many, times for many, many different types of medical problems and all the tests ect.....I have learned to just go with it and tell myself over and over: hey this is what I may or may not have and there is little I can do about it. BUT, what I can do is be thankful for the testing now available. We will find out all too soon what I have and then go from there.

I know it sounds lame, it does not help much at all, but that is how I manage through it all all these years. During a recent episode with my heart (again) I realized so vividly that when you are laying there so ill and have your life in the hands of the knowledge of all the nurses, techs, and Dr.'s and all their equipment, I came to see that all I am doing is finding out what seems to be the problem. I do not get to choose what I have and could have nearly lost my mind but decided that the one thing I still had that was working correctly was my mind! TO give up my clear thinking and go absolutely nutz would just add to the turmoil and medical problems.

I know this probably doesn't help much and you do want to crawl up in a ball and cry your eyes out and I have spent many times doing just that as well, either way you still get a dx and you get new meds or at least eliminate one other disease. 

It sucks. I hate it.

badbones

It's so frustrating, not really knowing what it is you've got, why you have it, and how to treat it!  As of now my diagnosis is just severe OA of the hips and spine, which came on very suddenly.  I have such mixed emotions - I don't want to be told I have RA or lupus, because of the serious nature of those diseases, but having the feeling that there is more to this than just OA is a big concern.  And having "just OA" leaves me with very few options for treatment - NSAIDS and surgery.  Since I'm young, I don't want to have surgery too soon, because I'll most likely have to have it done more that once.  So I wait, and hurt and wonder. . .

Waiting the result is anxiety, if negative it gives a sense of relief, if possitive the problem still has to face.

Why not gether the energy start to learn how to eat correct natural foods to gradually rejuvenate the body to fight the disease squarely. Most importantly not to be controlled by the disease and subject to drugs bombardments.

Is it possible? Yes, it it possible because I have done it for over 15years without drugs. 

I remember the worrying - well I still worry.  I didn't get a diagnosis for eight months because I could not afford all the tests and truth is - I was afraid.  I was certain I had bone cancer.  It hurt soooooooo deep.  RA was a relief for me.  That is hard to believe now I would also want to know why the 3 month appointment?  Did they put you on something new?  Generally they do not do 3 month apts until you are more stable and have you on a med they are happy with.  I do not think you just have to wait, I would call back to them and ask them what your treatment plan is, and maybe ask other questions too.

I also have been around the medical system .  The "squeaky wheel" really does get the grease!  Good luck.

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