You can have normal labs and still have Myositis. But how did you get IVIG orders?? I get 4gm per kilogram every month, but i don't feel it wearing off, if anything i get stronger as the month goes on. it is supposed to have a half life of 36 days or so , which is how long it is active in the body.

This is a great site for support. Also look up The Myositis Association, an online and active support system and group that puts on conferences and has the best research linked to its website. Hard to navigate website but take some time and dig deep there is a wealth of amazing info. the doctors on the board are all passionate about Myositis, all over the world. Good luck.
Shawna

Hi, bny806, and welcome to this forum. There are lots of nice people here. My blood work was mostly good for 2-1/2 years, except for ESR. My sed rate kept rising. My CK and CRP were often normal or only slightly elevated. I don't have an answer about the EMG, because mine was indicative of myopathy. But one thing I've learned on this forum, and that is that each of us is different. We all follow different paths to diagnose, and to recovery. Best wishes to you. Keep us posted.

Hi BNY 806. I felt very fatigued weak and ill for two years before my diagnosis. All my bloods were normal. Eventually my sed rate and CKPl levels became very high. This prompted my doctor to check my Ck levels. The rest is history. Best wishes to you. Autumm

Thank yall so very much.. yea it is all quite a mystery really.. I got sick and it was all just downhill, I slid downhill so fast, I couldn't breathe anymore my PFTs were low and I got admitted.. They suspected possible myopathy, CIDP/GBS, or MG.. I do have droopy eyelids and I coudlnt' even smile when my symptoms were at the worst

My muscles are so tender they HURT!! My joints kill as well. They have me on plaquenil- and I did GREAT when I was on that initial high loading dose, but when they dropped me down to the maintence I am in misery as far as discomfort goes.. I do take lyrica.. but it barely helps..

ShawnaN- due to my weakness they did the trial of IVIG and it make me 100% at first.. so they have thankfully continued it even without a great diagnosis at this point.. I have not had a muscle biopsy and I wonder if I should?? Anesthesia affects whatever I have (almost had to get intubated after my epidural last time and problems coming out of general anesthesia in the past)... So i'm terrified of being put under right now.

It confuses me that my EMG and NCV is normal... everyone is perplexed!! Heat makes me melt too!!! Does that happen with PM?

Thanks so much for yalls help!

Heat (and sometimes cold) can be a problem. Here are some older posts on the subject that you might want to read.
http://www.dailystrength.org/c/Polymyositis-and-Dermatomyositis/forum/12422419-does-heat-do
http://www.dailystrength.org/c/Polymyositis-and-Dermatomyositis/forum/14042449-2nd-night-woke-up-soaked

Thanks so much for the info!!! Do yall ever feel like your muscles vibrate?? Mine are constantly going (yet it doesn't show up on emg which is strange)... my joint pain is pretty incredible too, but my CRP and sed rate always stone cold normal /below normal!

Hi bny806. I am not a doctor, but see a neurologist. Your symptoms do sound like myositis but they also sound like myasthenia gravis. The droopy eyelids, heat symptom, and the vibrating muscles sound like myasthenia gravis. It is very possible to have myositis and an overlap of myasthenia gravis too. Do see a neurologist. Keep us posted.

Thanks trp.. MG is high on the list as well.. and that would account for the negative emgs x 4 too! Have you heard that the vibrating muscles can go along with MG?? I do get floppy with weakness when things get bad- like jello fingers. I came down with the flu last night and my usual achy sore to the touch muscles and joints went out of control!!! But I guess even without an underlying issue the flu can do that to a person!

I have seen multiple neuros, and am at the neuromuscular university center for the past 1 year.. along with the rheumy, a GI and internst there (and after having my son i was so ready to be done with dr's ha!). who knows!! I do still need a SFEMG, which will probably be on the agenda before too long!!

I do get muscle fibrulation i call it where the muscles twitch with over use or some times with who knows what, but usually when i am exercising we can feel the buzz as i call it with my yoga gal. I am so sorry you are suffering. I am glad the IVIG works, and i would stick with that.
Have they tested you for the myositis antibodies?? I have one that STanford found and the talk of muscle biospy has gone out the window now that i am on treatment. it seem to be more inacurate when on treatment. I do not have a positive EMG or CPK, so it is challenging, but we are going on that auto-antibody. The Myositis Association has a good video on Auto Antibodies and that can lead youinto different treatment options and tell you more about cancer profile or likelyhood you might get it later. I am the get it later type after age 60. I am 49, so glad to be this young right now!!!
Good luck to you, yes for me when it gets bad it gets really bad really quickly. Steroids help me and the IVIG Now at 2 years of symptoms in my muscles we got bad enough to do the IVIG. I am tolerating it pretty well.
My best to you, Shawna

Hi Shawna. My Rhuematologist ran the test for Autoantibodies at the beginning and found the Jo -1 (lungs) so he pays great attention to what is or is not going on with my lungs and works closely with the lung specialist. I could not have the muscle biopsy as my dose of steriod was too high and he says it would not have given a true story. It's interesting what research is discovering and this means we can get the right drugs for us at the beginning and our doctors with the information can manage our diseases better. We are moving forward even though it seems very slow to those of us with this illness. Autumm

Thank yall so very much!

Shawna- I Have been tested for SOOO much, but I gotta say, i Dont' think they have ever tested me for the myositis antibodies.. is that what they are called?? They have done ck a million times, along with aldolase once.. and tons of other neuromuscular tests..

My muscle twitching./vibrating is also exacerbated after activity.. it has been this way for over 4 years now! Started when I was pregnant with my daughter- so strange!! I sometimes sware I must have my cell phone against me on vibrate.. it is the strangest feeling!!!
Thank yall!

Hey bny806, Here is the article on myositis antibodies. You can also pull up the title on google:

New Antibodies in Dermatomyositis - Elsevier
www.elsevier.es/sites/default/.../103v100n03a13135033pdf001_2pd...

This video on The Myositis Association website is very informative. You will want to make some popcorn and listen carefully. It is fairly long but important to hear for anyone with myositis:

Autoantibodies and Prognosis by Dr. Jiri Vencovsky

The Myositis Association website also has this article to read about the most current medications for the treatment of myositis:
Novel Approches in the treatment of myositis and myopathies by Jermima Albayda and Lisa Christopher Stine

I know you will find these helpful. I was a little mad after looking at the new drugs that are available. I pulled up the drugs on Drugs.com to find that many are used to treat rheumatoid arthritis and they are NEUROTOXIC. It seems like researchers are unable to find medication to treat our disease without killing our brains in the process. I am NOT happy with current research medications. It seems like everyone goes through methotrexate, then Imuran, then a second class like cellcept. These drugs fail the patient like they do fail for everyone and eventually we all get put on $15,000 Ivig because this is the only thing that REALLY works. I think research needs to get its act together. We need meds that are successful like Ivig without the big price tag!

Thanks so much trp11, I will take a look at that video, and then I am going to ask them to check for those antibodies as well!

Yes, I would love to take a pill that would work as effectively as IVIG.. and cheaper!!! I worry they won't give me IVIG forever, plus it hurts my veins- they become quite tender, especially when i was doing it every 2 weeks..

My brother actually told me that he was reading his scientific america magazine recently and they were talking about a study with IVIG and alzheimers dementia and that it was showing significant benefits in those patients.. they apparently also commented that they therefore expect a big ivig shortage in the next year or two, which scares me!!! Then what will i do ???

bny806, stem cell treatment, & rituxan work for some people as well as the Ivig. The problem with these meds is the ridiculous cost. It will be interesting to see what happens for so many people with autoimmune disease.

I'm voting with whomever said myasthemia gravis. It's exacerbated by anesthetics, treated with IVIG (in refractory cases) and causes just about all of the symptoms you describe.

Actually, I don't think it's sounds like PM at all. I've had PM (and some other stuff) for like 25 years and not much of that sounds like me. (and I'm Anti-Jo1 +, CCRP+)

Good luck