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    Old 04-10-2014, 05:36 PM   #1
    BabsB8
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    Waiting for Lupus test results

    The hardest part is waiting right? I had a bunch of blood drawn at my dr visit this week to test all the anti-bodies and stuff. As for now, he thinks I have an auto-immune disorder. Possibly lupus.

    I want to share my symptoms here just so I can get some feedback. You know, since right now I feel like I am DYING!

    I'll begin where it all began. In Dec of last year I got a cold and pink eye. I thought I was over everything but my pink eye morphed into dry eye syndrome. At the time I thought that was the worst thing ever! During the day I was fine, but at 8:30 every night my eyes would turn dry as a desert and hurt and get blurry and drive me nuts! I went to the eye dr and the first thing he said was "You are too young, this is not normal for someone your age unless you have an underlying disorder." I am 35. He told me to take OTC drops and if that doesn't help he could prescribe something stronger. I also took some Rx steroid drops. I thought I would give it a few months and see if it got any better. In March I was due for my yearly GYN visit so I explained to that dr about my eyes. He prescribed the Restasis but didn't suggest anything besides seeing my GP about my concerns.

    Again, I fool myself into thinking that "this is just dry eyes, this is nothing to really worry about." Then last week...it hit me. And it hit me BIG! Guess what horrible thing I did? I went out in the sun for a few minutes with my kids! It was a warm spring day and I walked around the yard a few minutes with the kids and the dogs...in the afternoon at 5:00. Yes, I'm a redhead, and yes I burn easy. But not the first day of April at 5 p.m. for 10 minutes!!! But I come inside and all my sun-exposed body parts are covered in hives! Flat hives, welt hives, and bump hives! They itch, they burn! And I am confused. Never before in my life. I could see if I had rolled in poison ivy or touched something...but I did nothing but walk around. That was Tuesday, then by Friday I start getting the worst muscle pains in my things!! I have done P90X. I have run in races. I have worked out at the gym. So I know what over-exertion feels like. This is not overexertion. I don't know what it is but I think my muscles are trying to kill me!! I can't walk up and down stairs or sit down or stand up without the most excruciating thigh pain. In the meantime, the muscle pains are spreading. My calves, my biceps, my back. Moving is painful. It will bring me to my knees and cause weeping and gnashing of teeth. This is pure hell.

    I am waiting to hear from my GP with my blood test results. I finally went to see him after the muscle pains and rash showed up. He knows it's auto-immune, the question is...which one? I'm guessing lupus after all my Googling and internet researching. So until the results come back....I will endure this agony we call "trying to move around."

    Oh, and Tylenol and Ibuprofen do not help the pain. What is up with that? Ugh! Hoping to get some Prednisone prescribed!

    Any thoughts or suggestions??

     
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    Old 04-11-2014, 08:58 AM   #2
    BabsB8
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    Re: Waiting for Lupus test results

    However, I will update you before I leave this lupus board. Test results came back normal and negative for lupus or RA! Yay! But now what??? How does this explain my rashes, my dry eyes, and my muscle pains??? So I guess back to the doc I go to get some answers.

    Last edited by mod85; 04-11-2014 at 06:08 PM.

     
    Old 04-11-2014, 11:29 AM   #3
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    Re: Waiting for Lupus test results

    Hi Babs,
    I know from first hand experience how brutal the waiting can be. Do you know what tests they ran and what your results were? There is great support on this board and the sticky posts above the threads have a ton of information. I hope you get some answers soon and start to feel better!

     
    Old 04-11-2014, 06:03 PM   #4
    Achycrafter
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    Re: Waiting for Lupus test results

    Babs,
    I am sorry I can not be of any more help to you. The only symptom you and I share are the fatigue. I get some rash in the sun, but not like most do and only some times. My Lupus effects my joints mostly and I get very high fevers like 104 or higher, for about 6 hours every 2 weeks like clock work with out my medication.

    I know how hard it is to put up with the pain though, I literally and honestly feel your pain. I not so recently also suffered a concussion and have had migraine type symptoms for nearly 15 months straight.

    I can send you healing thoughts and a hug and hope they find out what is going on soon.
    I believe there are others here much more knowledgeable than I, keep talking, keep posting and make sure you always get a copy of your blood work results so you have them. Chances are you will get sent from doctor to doctor and will need them, and I have found my doctors do not always catch problems so I get them so I do if they do not.

    Again Hugs and feel better!

     
    Old 04-12-2014, 10:17 AM   #5
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    Re: Waiting for Lupus test results

    Babs, I have been out of commission for a bit, but normally active on this board. Your dry eyes sound like Sjogren's. an autoimmune disorder that affects the tear glands and saliva glands (dry mouth) and sometimes dry vagina. I would be sure your Dr checked you for SSA and SSB the two antibodies sometimes positive in Sjogren's. The hives brought on by sun exposure sound like photosensitivity of lupus, and the severe muscle pain may be inflammation of muscle tissue, which can happen in lupus, polymyositis, dermatomyositis, all autoimmune. I would want to be certain you have CK and aldolase enzymes in blood measured, looking for elevation to show muscle inflammation. Were sed rate and CRP measured? (General inflammation tests). I would make it a habit to get all lab test results yourself, either emailed to you or on paper, to start keeping a medical record on yourself. Hives are often found in Hashimoto's thyroiditis, so getting thyroid antibodies checked and hormone levels done would be helpful.
    Early in lupus, symptoms may precede the ANA turning + by months or even years, unfortunately, so keeping a diary of symptoms, taking pictures of rashes to document them to Drs. is important. You might find some better relief from Naproxen sodium (OTC) for the muscle pains. Good luck and I hope you get answers soon. I hope you have a good rheumatologist as well.

     
    Old 04-13-2014, 06:34 PM   #6
    BabsB8
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    Re: Waiting for Lupus test results

    Thanks for the responses. I do apologize for my grouchiness. I think the pain is going to my head! I have not had any luck determining what my issues are.

    I got my tests results back on Friday and everything is 'normal'. Sed rate, thyroid, ANAs, etc. I am going to get a copy of the results - that is a good idea. The nurse tried to tell me everything over the phone but she was very vague - just said they were all normal.

    Welll, Friday night I had a fever and even more body aches on top of my already aching muscles. Saturday morning I went to an Express Clinic and they did a Sed rate and wanted to retest my auto-immune bloodwork. The doctor said my sed-rate turned out to be normal. duh! But he gave me a cortisone shot, an antibiotic in case I was 'infected', and a Rx for 800mg ibuprofen. Now it is Sunday night and the ibuprofen twice a day doesn't do a thing, the cortisone shot has not helped my pain. In fact, the pain is not only in my thighs and calves, it has spread to my back, butt and arms!

    So in the meantime, I do what a worried-normally-healthy-woman does best. Search Google. You wouldn't believe what I matched up with my symptoms. Parasitic roundworm Trichinosis! You get it from eating undercooked pork! Well, I did eat pork chops a few weeks ago! And I do remember having some GI issues around that time (severe diarrhea and cramping). Then when that went away is when I got the hives and muscles pains starting! Just exactly how Trichinosis symtpoms are described! Ugh! Worms? In my muscles? Really?

    I know consulting Dr. Google on my symptoms is the worst thing ever, but I am desperate for answers. Especially when the pain is spreading and affecting my life! Walking, sitting, standing, moving, climbing stairs, doing laundry, carrying things...everything hurts! I am too young and too normally healthy to be suddenly sick like this It makes me depressed.

    Sorry I seem crazy. This has just really been so bizarre! Just not sure what to do. I called the Express Clinic back and they said not to worry about parasites until my bloodwork comes back and then they can go from there. I called my insurance phone nurse and they said to go to the ER where they would have more diagnostic measures and specialists on hand. They said with my pain getting worse and spreading that I should be concerned, and since the Ibuprofen and cortisone isn't helping that it is "odd". So one dr. says not to worry and the nurse says to go the ER. Well, I'm going call my GP tomorrow and see what they suggest. Is there something they can do or someone they can refer me to, or should I really go to the ER?

    I am ready for this mystery to be solved!

    P.S. Blood work on Saturday showed my WBC was 3300 (low) and my iron was very low-normal, but not low enough for needing Rx supplements.

    Last edited by BabsB8; 04-13-2014 at 06:37 PM.

     
    Old 04-14-2014, 07:19 AM   #7
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    Re: Waiting for Lupus test results

    I would get in to see a rheumatologist and make sure they run tests for myositis, the previously mentioned muscle enzymes. Low WBC can be seen in certain viral infections, like parovirus, and in lupus. Low iron can also be seen in lupus as well as many other conditions that cause anemia. I would definitely get results on paper from the original tests so everyone doesn't have to repeat all. Plus, patients are often told their results are normal when they are not. ???? If you recently started statins for high cholesterol, this can be a side effect. (Muscle pain) A rheumatologist would be most helpful, but PCP can do muscle enzymes in meantime.

     
    Old 04-14-2014, 04:28 PM   #8
    BabsB8
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    Re: Waiting for Lupus test results

    I went to my GP today because of the pain not subsiding with the cortisone shot and the 800 mg ibuprofen. And since it has spread from my thighs/calves to my butt, back and left arm. :?

    So first he gave me my test results on paper. They told me over the phone that all my results were "normal". But I did in fact have a few things slightly out of range. My CMP showed bun/creatinine ratio of 20.9 (6-20 is norm). My CBC with diff showed MCHC (whatever that is) to be 31.8 (32-36 is norm). He was not concerned about those. My Sed rate was 25. The norm should be 0-22 but he said as long as it is under my age (35) then I am okay. ?? TSH and Free T4 were normal. RA was <10 (<15 is norm). ANA was negative and Sjogrens SSA and SSB were 3 and 2. Very normal.

    This has been a confusing mess! Today he did a urine sample, stool sample and another blood test to check me for possible parasites since I did have some GI issues a few weeks ago that aren't completely back to normal yet. He is also checking for Lyme Disease and Rocky Mt. Spotted Fever. We have 10 acres with woods and dogs, so this could be a possibility. He is ruling out any auto-immune problems at this time and focusing on things that are uncommon since my symptoms don't clearly match up with anything.

    He also said this could be viral...like the flu (which I was not tested for but I've had the flu and this is not flu!). I am starting to wonder if it could be Mono because another mom on my child's basketball team had it in March and she showed up at some games after she said she was getting over it (although I tried to steer clear of her!). I did have a bad cold at the end of March with a yucky sore throat. When the sore throat went away it seems like that's when all the hives and pain started. I am losing track of the days and when things happened He also said if it was viral that it should only last 7-10 days so maybe I'm getting over the worst of it? So he told me to continue to antibiotics just in case, since i have fever still. And he prescribed me a double dose of Prednisone (goodbye sleep) and I started that at lunch today...still no relief from the pain. And taking XSTylenol every 6 hrs. Doesn't help at all. He said he's starting to think it's not inflammatory, but giving me the Prednisone just in case. :/

    All I know is that this is not normal for me and it is all very strange! We have to be out of town this weekend. Going to Memphis and there will be lots of walking and activity planned, but I may end up just staying in the room. He joked and said my hubs could push me around in a wheelchair! And I laughed and said I could just rent a Segway. Gotta laugh to keep from crying

    But who knows...maybe this is auto-immune and the numbers just haven't risen yet. But Dr. said he would keep testing me for everything until he finds the source of my trouble or I just get better on my own, which could very well happen. I go back on Monday for a follow up unless things get worse then I'll go sooner. I think the next worst thing is to wake up paralyzed which doesn't seem too far-fetched at this point!

    Last edited by BabsB8; 04-14-2014 at 04:34 PM.

     
    Old 04-15-2014, 06:50 PM   #9
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    Re: Waiting for Lupus test results

    Babs, as for your labs, the only thing probably significant is the sed rate of 25. The below your age thing is nonsense, IMO. Most people have sed rates of less than 5. The slightly high BUN/creatinine ratio is just from mild dehydration. The low MCHC is low average (mean) corpuscle (red blood cell) hemoglobin concentration which goes along with low iron or ferritin. Those are both very borderline. The high sed rate indicates inflammation, and a CRP test may be helpful if done for comparison. Lyme should be considered, as should acute viral infections such as parovirus, mono, CMV (cytomegalovirus) which last weeks rather than a few days. In the meantime, stay out of the sun, as if it is lupus, it would get worse, and you have a trip coming up to enjoy.

     
    Old 04-21-2014, 02:43 PM   #10
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    Re: Waiting for Lupus test results

    Thank you LadyBud for your response. I went to my GP today. My results from my Lyme tests were actually not clear. The IgG and IgM for burgdorferi were both negative, rocky mt spotted fever ABs were normal at .2. But the Lyme Western Blot ABS were equivocal at .97. Negative would be .90 or less and and positive would be 1.10 or more. So now he's treating me as if I have Lyme with tetracycline. Although he's not convinced that it is Lyme because I have not been bitten by a tick recently (it would have been last summer or fall IF I did and I don't remember - I do live in a woodsy area and we have ticks on us all the time...I just need Frontline lol!) I also have not have the typical bullseye rash. But I do have this crazy rash that is trying to take me over. And the muscle pains that are so awful. Who knows?

    He is also concerned that I may have DM so he is testing me for that and my creatine. I am scheduled to go to a rheumatologist on Wednesday and it is an hour away. I am going to write down my symtpoms and the timeline of when they started, because my GP seemed a little confused about it. Not sure what to expect at the rheumy. He stopped the Prednisone - I am on day 8 down to 40 mg. and tomorrow I would have started 4 days of 20 mg tomorrow before my pack was over. Kinda worried that stopping the prednisone will make my pain worse. I am taking my mom in the morning to have neck surgery for herniated disks so that will be a long day if I am not home in my comfy zone.

    Last edited by BabsB8; 04-21-2014 at 02:46 PM.

     
    Old 04-23-2014, 05:05 PM   #11
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    Re: Waiting for Lupus test results

    I went to the neurologist today. She did an nerve conduction test and the needle test where they "listen" to your muscles. She is convinced that I have dermatomyositis, a rare auto-immune like disease. Although I was sure that's what it is, I am still overwhelmed and in shock about accepting the news of a chronic illness. Good thing is that the symtpoms can be treated with meds and I'm hoping a whole foods/anti-inflammatory diet will help. I also go the results of my blood test on Monday and my muscle enzymes were high, although they didn't tell me what exactly they were. But that is another sign of the DM. Now I will be sent to a rheumatologist to get the official diagnosis and treatment plan but that may take several weeks to get an appt, so in the meantime I am back on 60 mg Prednisone. I went one day without the Prednisone and lost the ability to function without disabling pain. That speaks volumes.

    Just wanted to update my results here and now I will make myself at home over on the myositis board.

     
    Old 05-06-2014, 06:52 PM   #12
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    Re: Waiting for Lupus test results

    Babs,
    Getting a diagnosis is a hard thing. I had fatigue and my "traveling pain" I would have one or more joints that would swell and hurt badly for many years. My GP tested me repeatedly for RA but it was always negative. Then suddenly I started getting fevers. After a while they came like clock work every two weeks at 103 to 104 degrees for about six hours. Keep in mind my body temp runs lower than normal by about a degree and a half so this would have put me in danger had they been prolonged. As it was I was done in for several days after. At this point she ordered tons of blood work. Many items pointed to Lupus but just to be sure I had to go see an Infectious disease doctor who tested me for everything from Lyme and cat scratch fever to some weird cheese disease. All in all it took about a year and a half to get my diagnosis


    I know it is distressing and the pain is hard to deal with, I honestly feel your pain! They will find it, just keep pressing and you will get there. Stay informed, keep your records and do not give up!

    Hugs!

    Last edited by Achycrafter; 05-06-2014 at 06:54 PM.

     
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