What a mis diagnosis can do to your life | Arthritis Information

 

I have spent the past few days reflecting on the past three years since being given a wrong diagnosis. And I came to realize how it has affected me in every way. I have lived every single day of the past three years in fear and it is unbelievable the mental and physical toll it has taken on me. I went to bed every night wondering what tomorrow would be like. Would I be able to get out of bed, would I be able to make it through a 12 hour shift. When would the evil RA finally strike me down and make me wheel chair dependent. The news on Friday lifted a ton of weight off me and I am so relieved.

But I made a decision based on my last three years. I'm not going through with all the testing for lupus and other auto immune diseases. Why? I don't want to know. Is that wise? Probably not. I know there is something going on but I feel good right now, today. My RF was positive, still is. But I don't have RA. My daughters ANA is positive but she does not have Lupus. So I have to wonder what all these tests really mean. Many of you have negative serology but are in bad shape physically. This whole thing makes no sense to me. It is so complex.

I want to live my life one day at a time. I don't want to come back with a positive ANA and then not really know for sure if I have it. I want to treat my symptoms as I get them, not base my entire plan on a lab value that may not be accurate. There are many people out there that are waiting months to see a rheumy and I am not going to take up someone elses valuable appointment time. My internist can see me and if things turn bad, I will then be tested, when numbers are more apt to be accurate. These tests are very expensive and I feel my health care dollars could be more wisely spent, or saved.

Some of you will be shaking your heads at me but this has taken a bad toll on me. I was able to realize that this disease kept me in a constant state of mixed emotions, depressed, angry most of the time. I do not want to live like that anymore. I think I'll stick around here though and bug you guys now and then cuz it is hard to leave a place where you have made so many friends...and a few enemies, LOL. I've been awake since 0200 and have my PEARS class today. Hope all of you are having a pain free, great Monday. Hugggs. do whatever you want but closing your eyes and pretending nothing is going on is pretty childish.  It was less than a week ago that you were on here complaining about how bad your hip hurt. 

I have been going through exactly what you have described but I would never think of ignoring my illness. I have to take meds or a few years down the road I may be far worse. Please reconsider. I'd hate to see you do that to yourself. That's the nice thing about living in America.  You can do ill advised things that may just kill you and no one can stop you......... I think  that for now you are probably doing the right thing. Everybody can beat me up, too, but here is something to consider:  A lot of people have a lot of pain from things that aren't RA; what if this is a misdx like lorster has been told, and all this time things that could have been treated/cured have been 'dismissed' as the pain of RA?

Nobody really knows the entire situation except Lorster.

'Being in denial' about my MS dx two decades ago is the best decision I ever made!  No dr. ever since has ever, ever mentioned the possibility I have MS.  Ever!  And the dr. who made the dx?  "The best".  He is still considered "the best", was made head of the new MS center here.  Go figure.  We had more questions than answers with the dx, and so many tests had been normal.  It was like he kept testing and testing until he could find one to call it MS. 

I could have believed him, and if I had, I would have gone to him every time a symptom cropped up that could be MS.  I'd be on meds that are supposed to stop progression, etc., and probably be a very sick person today.  I know three people with MS on meds, and two have no outward physical symptoms, but all have terrible, terrible fatigue. 


Lori, I know you are reeling from the news, and need some time to back off and pretend that nothing is wrong.  We all do that sometimes.  Just don't make it a way of life.  A house will stand for a long time while termites are eating away at it, and then suddenly collapse.  Lorster, What a tough situation! I think even before wanting to know how to treat something, we crave to know what it is. How very frustrating and what an imperfect science medicine can be. I'm sure you have a lot to sort through both physically and emotionally. And if you are indeed a nurse, that explains a lot about not wanting treatment... I've seen others like you!  personally...... I'd get a third opinion. I wondered when this would catch up with you. So many thoughts, so many emotions. I can only imagine the roller coaster you have been on these past few days, not to mention everything you have gone through in the past three years. It is good to get your thoughts written down. It is good to share things and get feedback. It is very good to work through all of the emotions that must be flooding your head right now. In the end how you approach your health is your decision. The only thing I can say is please don't be rash in a decision to not treat what is going on in your body. You are smart, you will do the right thing.

I miss the days before my diagnosis. If I had an odd pain here or there, I could just ignore it. I could work out with a little discomfort and not think twice. I miss the days when I could tough anything out. Geez, I was one strong woman. No one could tell me I couldn't do something - and I loved proving them wrong if they did.   Every now and then I get glimpses of my old self, but it doesn't last very long before I start feeling tired and sick. Disease fatigue sets in and I get sick and tired of feeling sick and tired. What makes it worse is that my medication doesn't change any of this. So, I get where you are coming from when you say you don't want to know. The pure psychological affect of living with knowing you are ill everyday takes its toll and can make things worse.

Denial doesn't change a diagnosis. Once you've had a chance to sift through all of this, you will make the right decision. I think I would get another opinion as well. I feel for you. I can't imagine how I would feel. I hope you find some peace soon.    Lori, you have to do what you feel is right. It sounds like your internist is going to be aware of the situation and can check on things if you start showing more symptoms of Lupus. I say find out definatively what you have and then... decide if you want to treat it or not. It is better to know what you have for sure than to wonder which one you have. Neither are good, but maybe it is something totally different.I've been MIA for a few days and when I read this, all I could say was WOW.  That's some BIG news.
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