Hi, new here to using message. My question: Can I have polymyositis and it not register in the blood work?
I show physical indicators for polymyositis with terrible pain in both thighs, knees, shoulders, neck and arms but the blood work does not back it up. I have two autoimmune diseases, Sjogrens and Hashimotos thyroid disease. The extreme pain and the pattern of pain suggests myositis. This pain is very debilitating and as yet have not been given treatment for it. I can't take antiinflamatories because of a stomach condition. The Doctors in my little town offer no help so I must seek a rheumatologist in another city.
I know it is not fibromyalgia because I have been diagnosed with that since early 1990s and I know that pain well, this new pain is nothing like, much more severe, at times cannot even lift my leg up a step. I fear they will ignore my symptoms because it doesn't show in blood tests, and by the time it does maybe I will have muscle damage.
I have never had muscle pain with PM. My CPK's were 6900 and I had a muscle biopsy to diagnose PM. My cpks are now around 430. I was diagnosed in 2008. The only symptons I have ever had with PM is being very tired and not a lot of strength in my arms and legs. I started off with prednisone and then went to methotrexate which is what I take now. Go to a website called How one person is dealing with polymyositis. It's a great website and really helps me alot. Good luck!!!!
Seems like every case I read about presents itself differently from person to person, the doctors must go crazy trying to diagnose it. I just want relief and my life back, don't care what it is called. Thanks for your response.
The following user gives a hug of support to OregonJean: waddles (05-31-2011)
If you haven't had your CPK's checked that would be the first thing to have done and if they are high (normal is aroung 100) the next thing would be a biopsy of the muscle. Let me know how you do as this is such a rare disease and I don't think the Doctors check for this. It took two years before my primary Dr checked my cpks. He kept telling me I was tired because of my age. I was 63 when I was finally diagnosed but I had the symptons of tiredness and no strength in my legs and arms for two years before being diagnosed.
Thanks, I had it checked this week during the height of this episode and they appear normal, but the same for Sjogrens but it showed up in biopsy. Will see a Rheum. soon and maybe unravel the mystery, this time. I have been dealing with autoimmune issues for 15 years now and am always suprised how many ways it shows up. Regardless, it seems no matter what they call it the treatment is similiar. I'll check back with any new info to share.
I hope you are still on this site, I just got to this post and I know it is old. I hope you have found some help by now. If not I will tell you my story maybe it will help.
I have several autioammune diseases, Photosensitve, hashimotos, UCTD with features of lupus and scleorderma, I have perherial nueropathy, Myositis, and my new one, Hashimotos encelophalopathy, along with an autioammune colitis called lymphocytic well the reason I am telling you this is because I was in thes same boat as you with other autioammune diseases it is hard for doctors to dx lmyositis because all the symptoms of the otheres overlap. My legs were so bad, could not climb up stairs, curbs, my thighs really hurt and are so heavy.But my cpk was always normal, my ANA is high but the cpk was ok. I had a muscle, nerve biopsy, spinal taps, emgs, nerve conduction tests, eegs, mri, mras, and my muscle biopsy showed inflammatory muscle fiber, but only one, so they still hestitated to name it myosits. But then I had another CPK test and sure enough it was elevated so then and only then did they name it. I am one of the ones with it that get pain I know not everyone does, but I guess I am just lucky, lol.
My arms will be weak and heavy and hurt too. My shoulders, neck, fingers you name it. But my moral of the story here is do not give up be your own advocate. I knew I had this before the doctors did. My symptoms were classic. Yet I think by the time I got to a rhuemy a lot of the obvious symtpoms were gone, and my primary doctor just kept blaming it on stress.
Hi, I have polymyositis and my blood work also did not indicate it, which is why I insisted on a muscle biopsy. It came up positive. The doctors do not understand why this is true but the biopsy confirmed it. I cannot take any of the immunisupressants or prednisone which seem to be the only way they will treat it as it causes severe illness and increases the pain triple fold. I am now trying to find a doctor who will prescribe low dose antibiotoc therapy. So far no luck but I am not giving up. I also have hashimotos hypothyroidism and also have been told I had fibromyalgia for 20 years. Now that I know what it is I can start from scratch if I can get the help. Good luck
Wow what have they been doing for you then with they myositis? I am on Imuran, but I still have a hard time I also have the hashimoto's but I also have found out in Nov I have Hashimoto's Encelphalitis. Has anyone ever checked you for this? It can mimic alot of the symptoms you may be getting from the myositis. Let me know if you want the whole boring details from me on it. Also my cpk did finnally came back slightly high so rheumy then said myositis, but my neurologist by muscle biopsy had alread told me that. It is so unnerving to have doctors not agree on things, while you do not feel good.
Hi Susie, Thank you for replying.
I am not sure what Hashimoto's Encelphalitis is so I will research it to see what might fit. I just got back from my primary care doctor and he has agreed to let me start the Low Dose Antibiotic Therapy that I want to try. I talked to a pathologist at the hospital where my daughter works and he is from India. He told me that they treat polymyositis with this therapy with a lot of success. I do not understand why the US try to sustain all immune diseases with the same old treatments. Steroids and immunisupressants. My doctor told me that it is so difficult to find out the underlying cause of each personal case that it is just easier to treat by the protocol that has been in place for more than 40 years. I have done quite a lot of research about the antibiotic therapy and how it works and it makes a lot of sense. Since I cannot take the traditional treatments it seems to be my only hope. The pain in my arms and legs sometimes is so bad I cannot stand it. I am on pain medication for both poly and spinal stenosis in 5 canals. I have no disc between S1 and L5 vertebrae and 3 other bulging discs. I have been waiting for 8 years for the doctors in the US to start using artificial disc's and now I found out that they are now using them! Unfortunately they will not operate on me with muscles that are becoming necrotic. My goal is to beat this disease and then I can have my back surgery. I dream of the day I can take my grandchildren for a walk in the park or to a carnival where I don't have to use a wheelchair or walker. I don't even have the strength to babysit them when that is all I really want to do. Good luck to you and I will let you know if this therapy works.
oh Karen, please let me know how it all works out for you. I understand how you feel about just wanting to play with the grand children. Right now I am going through the extreme fatigue. I just want to sleep, no energy at all. I just try to tell myself it could be so much worst.
Good luck to you and let me know.
I guess I'm not the only one whose blood results didn't confirm myosits. My muscle biopsies (2) did, but they ended up questioning the results of those. It's been hard having a symptomatic medical condition that really isn't confirmed. It's good to know that I am not alone with the testing though. The docs pretty much say if the blood work doesn't confirm it then you don't have it. I must say though that they did so many other labs to find other reasons for the muscle pain/fatigue but came up empty.
I also had Epstein-Barr virus, Hashimoto' Thyroidtis, and Adrenal Fatigue prior to or during the onset of my muscle issues. Currently, my ALT and AST (liver enzymes) are elevated...with no reason that they can find. I feel like a mystery diagnosis person!
Best wishes to all of you here.
There is another muscle enzyme, aldolase, that can be tested along with the CPK. My enzymes fluctuate between normal and elevated in the 3-400 range from lupus myositis. An EMG can help diagnose myositis as well, which is done by a neurologist, prior to muscle biopsy.
It is so discouraging to have pain and weakness and no answers. I bet you know in your heart you know what you have. It just has to be proven. I myself had the biopsies done, and there were only a few inflamed muscle fibers, so I had one doctor (neuro) in Chicago say I do not know if I believe you have myositis. I am like, well lets see I can not climb stairs at all, or curbs, I have a hard time getting out of chairs, or off the floor. I could not believe it. But again it was because my cpk was not c oming back postive. Had emg also done which showed some abnomalitis. But still not enough. Got home to my normal neuro and she did another round of blood tests which came back with an elevated cpk level of only around 380 but still high. So then and only then did my rhuemy agree that I had myositis. Mine they say is autoimmune caused. I myself believe it is dermamytois because of the rashes I had before I ever went in for help also allergic to the sun. But it makes no difference of what they name it, as long as they are treating it. But I do have quite a few other autoimmune diseases, so symptoms cross over including the Hashimotos thyroiditis like you have. But I do understand your frustration. Just do not ever give up.
The following user gives a hug of support to sclerogirl: hopefloats36 (02-25-2013)