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Peggys61 09-12-2012 02:12 PM

confused and no dx.
I have been fighting muscle pain off and on for years, now i have pain in the knees, hips, low back, neck, wrists and hands. My doc did a rheumatoid factor test and a ana test both were neg. I have a high sed rate so he has referred me to a rheumatologist but can I have lupus with the neg tests? Also I have read there are a lot of other illnesses this could be very confused thanks for listening.

Peggys61 09-20-2012 04:18 PM

Re: confused and no dx.
Here is another question I have can lupus cause a cough, I cough constantly a dry hacking cough for no apparent reason just wondering I see the rheumi wed.

blessedtobeme 09-20-2012 04:38 PM

Re: confused and no dx.
Peggys61, everything about autoimmune illness is frustrating in my humble opinion. I too, have been having tests for 2 years now and whatever it is that is making my CPK level and liver enzymes elevated escapes a conclusive diagnosis. I just recently had my 2nd abnormal emg, body extremity ultrasound, result - synovial lining in my toes are thickened but no erosion yet. RF was negative but CCP was weak positive. This hints to and doc's nurse intimated that it is Rheumatoid Arthritis. I do have an ongoing case of Raynauds in my feet and that keeps the tests coming. I have a muscle biopsy scheduled for Oct. 2nd. I'm just praying for some conclusive result so I can move on with living and not trying to maintain my sanity.

I hope that it turns out to be something that can be healed, Peggys61. Keep in touch and let us know. That is how we learn.

ladybud 09-20-2012 05:54 PM

Re: confused and no dx.
4-5% of people with lupus have negative test results, and a larger number, as much as 40% of people with RA have neg blood tests for it. Both lupus and RA can cause a cough. Since this started with muscle pain, I would also ask to have your CK levels checked on your blood, which is elevated in myositis (muscle inflammation). Since your sed rate is high, there is definitely something going on, and the rheum will run more tests to try to pin it down. Some people develop symptoms of autoimmune diseases before their labs show anything definitive, so it can take awhile to get a diagnosis. I hope the rheum has some answers for you and starts you on some treatment to help ease your pain.

blessedtobeme 09-20-2012 06:16 PM

Re: confused and no dx.
So can I ask if it is possible to have RA, lupus, and myositis?

ladybud 09-20-2012 07:52 PM

Re: confused and no dx.
Unfortunately, yes. I have all three myself. Xrays may be helpful for RA because if there are erosions in joints, that is classic of RA. It makes treatment more tricky when all three are present, although some drugs are used for both or all.

blessedtobeme 09-21-2012 07:36 AM

Re: confused and no dx.
Oh no, I wonder if that is why my Rheumy still wants to do the muscle biopsy even though the ultrasound pretty much verified the RA? I was kind of hoping I could talk her out of it.

I do have the malar rash she said, my face thickens up and peels pretty badly between my eyebrows and into my eyelids. Pretty gross. I can just peel or rub the skin off. I get sores in my mouth and am having trouble getting up out of chair without my arms now. I'm telling ya. Getting old aint for sisses.

Thanks, Ladybud. I had been wanting to chat with you after reading your responses. You seem so knowledgeable and that is what I need more of - knowledge.

ladybud 09-21-2012 08:45 AM

Re: confused and no dx.
Its the pits getting old and having multiple illnesses! But we women are no sissies-we seem to trudge on and prevail in spite of our challenges. Good luck to you-I hope whatever treatment you get on helps you greatly!

Peggys61 09-26-2012 07:44 PM

Re: confused and no dx.
well met with the rheumy today she ordered blood tests and a chest xray and will see me in a week so time will tell. more waiting. :(

Peggys61 10-08-2012 11:35 PM

Re: confused and no dx.
well I have had two appointment with my rheumy and we still know nothing, all we find is a elvelated sed rate, cmp ? is elevated, ra neg, ana neg, folic acid very low, vit d low, started me on vit d, and folic acid as well as a multivitamin, and methodone along with my oxycodone for pain, and will see me in a month, told me not to take any antiinflamatories of any kind, and we will check things again in awhile, so i guess i continue with the no news, is normal she apologized that she couldnt give me a dx and I told her i wasnt expecting one anyway was used to it being like this, time will tell thanks for listening. Peggy

ladybud 10-09-2012 01:07 AM

Re: confused and no dx.
Peggy, just tell yourself and others, if you want, that you have an autoimmune disease. That is safe to say at this point, and in time something will show up that will define it further. did chest X-ray show anything. For the cough, a chest CT scan might be better and pulmonary function tests might aid in getting to the bottom of it. Are you on an ACE inhibitor for BP by any chance? Those are notorious for causing a dry hacking cough as a side effect, and the cough goes away when drug is stopped. Interstitial lung disease develops in many RA and some lupus patients, and by the time it shows up on X-ray, it is advanced. I would see a pulmonologist for the cough. Could be asthma too, but it should be checked out, so it can be treated before it gets worse. An MRI of your worst joint might yield a diagnosis if erosions show up (RA).Mri will show erosion before an X-ray does. Your Dr may be willing to pursue these things, since she obviously is aware that not having a more definite diagnosis is difficult for you. More specific treatment will be forthcoming once there is a name to this so getting to that point is important for treatment to start early rather than late in the course of illness. good luck and keep us posted on your progress.

Peggys61 10-09-2012 08:03 AM

Re: confused and no dx.
thanks I am on no bp meds at all, i will talk to her about it she put me on musinex for the cough the xray was fine she said it that didnt do it in a week to go on zrytec it hasnt helped so i guess it will be allergy meds will ask her about the other tests thanks again.

hopefloats36 02-22-2013 04:08 AM

Re: confused and no dx.
Hi Ladybug,
Interstitial lung disease may also be prevalent with Myositis. Autoimmune diseases are so frustrating and sometimes definative diagnosis are challenging to come by. Hang in there all.

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