The Lupus Forum banner

Why do I even bother?

400 Views 5 Replies 5 Participants Last post by  envy
Hi guys,

I just got off the phone with the rheumatologist concerning my test results. Apparently the only thing to come up positive is the ANA at 1:160, which she had tested at 2 separate labs (paranoid much?), which was the same result as the one from my old rheumie in Ohio. So to sum up this visit: I have Raynaud's of which type, I don't know and a positive ANA. Neither of which help me in the least since I still feel like someone had a go at my ribcage with a baseball bat, my joints and muscles still ache and apparently no doc I ever see wants to do anything about my symptoms and keeps adopting a "wait and see" approach, meanwhile I'm left to deal with the pain on my own with a medicine chest full of NSAIDS that don't even take the edge off. Isn't 9 years enough for something to come up positive?! I have half a mind to just go to a regular doctor because at least they tend to at least prescribe something, even if it is NSAIDS. I'm just so sick and tired of this and I honestly don't know why I even bother and I wish I could stop crying long enough to type this without having to grab a tissue every few seconds. Arg! I just don't know how much more of this frustration I can take...I can't keep getting my hopes up that someone will finally figure out what's wrong with me so I can start feeling like a human being again only to have them dashed every time the labs come back. Maybe it is all just in my head.

Sorry for the rant,
1 - 6 of 6 Posts
Hi envy i felt the same that i got more info from my own Doctor The first rhuymy said yes lupus second said not sure.Went to my own Doctor and spoke to him and he said i had lupus.Now i have Raynauds aswell as i said my own Doctor knows me better than anybody else so i stick with go with who you think knows you better hope you get some answers soon.Best Wishes Elisabeth
I'm so sorry you have to go through so much to get some help for your illness. Have you tried the very direct route... asking the doctor if she can at least prescribe something for the pain and try some baseline medication like Plaquenil for a possible UCTD diagnosis? Just to see if it helps?

After 9 years you really deserve something better than what you've gotten. I would call the doctor back, leave a message asking her to return the call and then just be very direct and ask to please try something to treat you as mentioned above.
Hello there,

I don't really have much advice to offer. It is very frustrating when the rare people that believe you are saying "wait and see" and you're wondering how on earth you can keep going as you have been for what is now seeming to be an indefinite period.

I found that when I was faced with docs they really couldn't get hold of the idea of "it hurts". I could tell them again and again that it hurt and it was like they really didn't care less.

I then learnt to describe what the pain was stopping me doing making sure I took examples that people took for granted. For example "I can't put moisturiser on because I can't hold my arms up", "I can't write on the whiteboard", "I can't sit at the table and eat because I can't sit straight for so long"...

I also learnt not to grin and bear it when going to see the rheumy. Telling her my hip was causing extreme pain wasn't really working. Limping into her office and telling her that that was what it was like most days did. Until then I had been "unlucky" and had better days with my hip when seeing her so I don't think she really believed me. I remember at that viit she was pretty shocked at how difficult any movement was for me.

Sorry I really can't help more but I do know that you mustn't give up. It took me 9 years to get a diagnosis but I did get there.

See less See more
Hello envy
I'm sorry for your suffering so many years. The others have given you some good advice. A lupus diagnosis is a pretty serious business and good doctors won't give it lightly.

I am sorry that I don't have anything all that helpful to say, because I am wondering where the idea of lupus came from in the first place. The diagnostic criteria list was drawn up for classification not diagnosis but it gives a pretty good idea of the most common features of SLE. It is very unusual indeed to get a diagnosis with absolutely no abnormal blood work of any sort and there has to be a compelling weight of clinical evidence. You have checked that all the relevant tests have been done I suppose, including things like complement.
An ANA of 160 isn't all that much and could have many causes including Hashimoto's, I think. But additional antibody testing should be done if ANA is positive.

I think you said this Washington rheumy is a lupus expert ? It sounds as if there is nothing more to be done at this point pursuing a lupus diagnosis.

I think I would do as you propose right now, focus on getting effective pain relief although that isn't so obvious when the cause isn't clear. I'd see if I could get a short course of Prednisone just to see if that helps.

Wishing you good luck and better health before too long
See less See more
Thank you all for listening and your replies. Right now, I'm not comfortable enough with this new rheumie to ask her to prescribe something because she made it pretty clear she wanted to see other labs positive before she did so. As for past and present symptoms and labs: photosensitive rash, malar rash (whether it's the butterfly one or not, I don't know), arthralgia, myalgia, migraine, Raynaud's, Hashimoto's, ribcage/chest wall pain, low fever, fatigue, night sweats, ANA 1:160, borderline dsDNA (she didn't recheck this), RF 1:80 (she didn't recheck this). I know the numbers aren't high, but by the time I've seen these docs, I've usually hit the tail-end of a flare or the very start of another one.

The more I read on this doctor, it seems she focuses more on scleroderma than anything else in all of her research articles I could find on pubmed central. So I'm at a loss as to why the hospital says she specializes in SLE.

Maybe I should just take these results and have a GP look at them for a set of fresh eyes and an opinion not clouded by a specialty since specialists tend to only see things in terms of their specialty and can lose sight of the bigger picture. I just can't figure out what other set of symptoms is brought on by exposure to sunlight given that my thyroid function is perfectly fine and the symptoms of Hashimoto's would only manifest when hormone levels are off. What do you think? Is my line of thinking off-base here? Either way, I'm still going to be dealing with a total stranger since we just moved to a different area. At this rate, blindly pointing into a phonebook in searching for a GP or choosing from some random list the insurance company provides is all I can do on this one since noone we know here ever needs a doctor (wouldn't that be nice?:)).

Thanks again for all of your advice and support. Take care.
See less See more
1 - 6 of 6 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.