So i saw the kidney doctor today. mayo Wouldnt transfer care unless i had one set up close to home. and he asked me why i was there because all my labs show no kidney issues. and according to him the main ana test done for lupus has always been negative and doesnt believe i have lupus. he said they couldnt find anything so they assumed. so now were back to square one… SIGH! there main goal right now is to get me off the prednisone slowly and watch my crp and sed rate levels to see if they increase as i get off the prednisone. he is thinking some possible conective dissorder or its side affects from a virus i had in dec. the neurologist brought something up about thyroid. dont remeber what its called. so more testing and waiting… my fear is that its been so long and that the damage that has been done will affect me the rest of my life…
With immune disorders the damage is usually just during the flare- the body has amazing powers of healing and recuperating- especially since you had problems for such a short time and your tests are showing no adverse internal organ effects. Your attitude should be 'Phew- got away scott free on that one!!" Lucky you- so many of us would LOVE to have news like this! And yes you can feel absolutely horrible and still come out the other end with no permanent problems.
Yeah! I am happy that there is a possibility that its not lupus!!! :) I would be so happy to put that behind and move on! Its just hard having to start all over from square one because they couldn't figure out was wrong and dragged there feet and now I am living with results from prednisone. But, I am just trying to hang in there and wait and see. All the doctors I have seen are thinking some connective tissue disorder or auto immune disease. From my elevated CRP and SED rate as well as one ANA tighter of 1:160.... The key is just what exactly is it.... They also said that the virus I had in Dec. could have triggered what ever this is.
And I got that wrong its not a thyroid disorder that they brought up, but a muscle/nerve disorder. Its called myasthenia gravis, my new neurologist brought up the suggestion of it. So we will see if they go any where with it. The interesting thing about it is that people with it have a higher chance for other auto immune diseases such as lupus and/or rheumatoid arthritis. We see my PCP in a few weeks to go over all the new doctors suggestions and such and to see how I am doing tapering of the Prednisone. Just trying to be patient....
Honey -you were only on prednisone for a couple of months- the side effects go away when you are off Permanent damage from prednisone comes after years not weeks of use. The most frustrating part of autoimmune dz is that it can take years to get a firm diagnosis - but your symptoms also may be due to something else totally unrelated and more benign or at least more manageable
I went to a different rheumy after 2 years because all my old rheumy did was give me vitamin infusions or solumedrol IVs if I had any complaints. So, the new rheumy did what felt like hundreds of tests and announced that if it weren't for the tests taken a few years ago by old rheumy, he would not think I had lupus. He then said that the fact that I've been on plaquenil those years and it seemed to help, that it could be skewing the results. I'll be honest, I was disappointed. At least I had a diagnosis and a reason for feeling like crap. What would my family say. (yes, I worry what others think of me) Now, I'm trying to decide whether to stop the plaquenil to see if it really is helping? and/or to prove to this doctor that I did have lupus. Deep inside, I would rather NOT have anything wrong with me. I have tons of projects I was right in the middle of when I started going downhill. Through all the tests which included X-rays and MRIs, he did find carpel tunnel in both wrists, an issue with one elbow and back problems. My other joints that hurt do not get inflamed, so they are harder to "see". And, at the time of the appointment, I was having a run of good days. argh!
I hope you get answers. I know how you feel. Hugs!
Thanks for the encouragement! :) It really is hard. Its hard we dont want to be sick yet we just want to know whats wrong so we know how to live our lives. I was going to school and now thats all put on hold because of this. I think it would be a little different if the second hospital would have done more to figure out what was wrong instead of saying it was all in my head and sending me home with a mental diagnoses! So I had already been on some medications before even being seen by the Rheumatologist almost a month later. So I dont know if that messed anything up or not. But the Rheumatologist said if he had to say what it was that its Lupus... so who knows what. There going to watch my levels as I go off of prednisone to see if they go up or change at all. the lovely prednisone has given me catartacts and now I am border line diabetic and we have diabetes in our family so I am praying that I dont become diabetic!
artchick said:
I went to a different rheumy after 2 years because all my old rheumy did was give me vitamin infusions or solumedrol IVs if I had any complaints. So, the new rheumy did what felt like hundreds of tests and announced that if it weren't for the tests taken a few years ago by old rheumy, he would not think I had lupus. He then said that the fact that I've been on plaquenil those years and it seemed to help, that it could be skewing the results. I'll be honest, I was disappointed. At least I had a diagnosis and a reason for feeling like crap. What would my family say. (yes, I worry what others think of me) Now, I'm trying to decide whether to stop the plaquenil to see if it really is helping? and/or to prove to this doctor that I did have lupus. Deep inside, I would rather NOT have anything wrong with me. I have tons of projects I was right in the middle of when I started going downhill. Through all the tests which included X-rays and MRIs, he did find carpel tunnel in both wrists, an issue with one elbow and back problems. My other joints that hurt do not get inflamed, so they are harder to "see". And, at the time of the appointment, I was having a run of good days. argh!
I hope you get answers. I know how you feel. Hugs!
I also want to empathize with you. No one wants to be sick, but it is very hard when there is something wrong and no one can tell you what it is. Especially when it changes from Lupus to not Lupus. For those that have never experienced thjis, it can be hard to understand. My diagnosis changed from UCTD, to Lupus and then back to UCTD (undifferentiated connective tissue disease). It is hard to explain to people that you feel like crap and there's no name for it. Of the name is something like UCTD which nobody has ever heard of. With Lupus, you have something that people have at least heard of and can empathize with. Having no diagnosis at least suggests in others minds that there's nothing wrong with you or that you are somehow making it all up (which of course if they knew how you felt, they would know that you aren't). It also doesn't help that there aren't any obvious signs of illness (no canes, limps, casts, bandages, etc.) It just seriously messes with my head. I really hope you get some answers so that you can put a name to it. Hugs!
oh that is grap, i went down the doc, merigo round for 15 yrs with each doc. having their own opion. If u have symptoms on primary list and at least two on the other list u have it, and if u r on meds your ana will be normal because that is what the drug does. Get all the info u need copy it take it to the docs be your own advicate. Doctors r not God. They told me it was my thyroid too well it is a symtom, lupus effects all of glands in your body because they r part of the immune system du.
Thank you heymj and Rebecca! I really needed that. Sometimes its like is it all in my head am I not really sick? cause they cant seem to figure it out. but than I move and try and do and relies its not all in my head. And there are those few labs show there is something but what is it! So thank you again for understanding how I am feeling! :) My mom and I have been looking and still wondering if I dont have lupus along with the myasthenia gravis. I hope that they will test me for it....
I just had the blood test done and they were all negative for lupus too. I have been on plaquenil for 9 months. My doctor said it doesn't mean that I don't have lupus because the tests are inconclusive. It's like a thyroid test if your tsh is 3 or more and you have the symptoms, you need the meds.
My brother has MG (myasthenia gravis) and you don't want to have that. All autoimmune diseases are bad and everyone has them on their own level, they are all hard to deal with. So I am hoping that you have a mild case whatever it is.
Hang in there!
Very confusing
I’m in a similar situation at the moment, been poorly all the time pretty much since I was born but because my Ana telsta came back negative, it took me ages to get seen by a good doctor who actually listens to me and acknowledges that there’s clearly something wrong! I have a under active thyroid, and my possible most likely diagnosis is gonna be lupus or fibromyalgia. It’s taken me a year to get to the point where I can see a rhuematologist and there’s been times I’ve felt so depressed because of the whole process and pain and you start to doubt yourself! It’s a hard situation because you know something isn’t right and wanting a diognosis but worrying that maybe you’re just going mad and this is all in your head! I also struggle to talk to family and friends about it because I don’t want them to think I’m overacting. That’s how I ended up here, on this amazing forum full of such kind and understanding people! Keep your chin up, Stick with it and don’t give up until your satisfied you’re being treated appriately and having your needs met! good luck xxxx