I also get IVIG, but for Common Variable Immune Deficiency (CVID). I get muscle weakness, numbness, joint pains too. I have been diagnosed with scleroderma (diffuse systemic sclerosis) with lupus overlap, RA, and sjogrens. It's so hard for me to tell what is causing which symptoms. I take arava, prednisone, humira, and Gammunex-C (that's the IVIG). I do physical therapy and it helps with the muscle weakness. But right now I haven't gone to PT for a week because I have bronchitis and a sinus infection. Trying to make myself do the exercises at home but that's hard when I just want to sleep. I've missed four days of work this week.........Winter time seems to make me so much worse.... I have been tested for polymyositis because of the muscle weakness but they say I do not have that. Have you had (the name of the test escapes me know ) the one where they stick pins in your muscles and shock your nerves?

THank you - so sorry you have to deal with all of that!! I'd love to have my body back from 4 years ago!!!

Oh yes, I have had like 6 emg / ncv.. initially one had mild demylenation on my right knee which was pretty symptomatic... but otherwise normal.. the needle EMG always normal... I really think a muscle biopsy would make my mind rest easier.. I am only on IVIG.. but if we could absolutely prove what I have then I'd do immunosuppresants and everything to get this beast under control.. but right now I just don't like that idea without a firm diagnosis

As far as the scleroderma goes - do you ever feel like you can almost feel the tendons or something inside? I have this weird sensation every single time I move my wrist a certain way (like opening a water bottle) it snaps like its sclerosed inside.. the nerves zing when it happens to, as if it's sclerosed (sp?) around the nerve and tendon.. my muscles aren't spastic, more like mild flaccid weakness.. I do have intestinal, cardiac and lung involvement too.. yay! I also use gammunex... and plaquenil (which has been a huge help as well).. I just want more answers.. and better control

Do you ever feel like your muscles are ripping away from your ribs? I have that sensation all the time if i expand my rib cage and it;s miserable and scary!

Six emg's. Bless you. I only had one and I do not want to repeat it. It was one of the most unpleasant things I've had done. I've had lumbar punctures that were better.

YES, I can relate totally to what you said about opening a bottle. You put it into words well. I do seem to be able to feel my tendons inside my body pulling or tightening - especially my left thigh and left ankle. (left ankle is trying to turn inward). A couple of fingers on my left hand are tightened up and bent and won't straighten out. That's scleroderma. I also have pleurisy a lot but not the muscles pulling away from the ribs feeling...

My muscle weakness was so bad I was on a walker for a while. I did physical therapy at a rehab hospital in their pool and then after several weeks was able to work up to be able to exercise in the clinic. It made a huge difference in my mobility but I have to keep it up. Now I use a cane some days but not even everyday.

There are specific blood tests that can be done to see if you have scleroderma, if you are concerned about it. First I was diagnosed with RA and all the symptoms fit but I had "extra" symptoms and after four years, I did not have joint damage. So I still have the RA diagnosis, but I'm not showing positive for it in bloodwork. I have a cardiologist, pulmonologist, gastroenterologist, general doctor, immunulogist, rheumatologist, neurologist. And gyn of course.

My health has improved dramatically since I have gotten this particular team of doctors together. This is my fourth rheumatologist. She found the scleroderma. I took plaquenil for about three years and then it started causing migraines - so weird. Now I take arava instead. I took methotrexate for a year but it didn't help and caused my hair to come out really bad.

I have Undifferentiated Connective Tissue Disease (UCTD), which is another type of connective tissue disease like Lupus.

For me, muscle weakness is and always has been my primary and worst symptom. I found out the hard way that when your chief complaint is muscle weakness, you get repeatedly sent to neuros for EMGs (I've had 5).

On my first trip to a rheumy we found that I have one of the antibodies that shows up on the "myositis panel" of bloodwork. The AB I have is called Ku. People who are positive for Ku have a lot of muscle weakness involvement.

I'm able to be up and around for shorter periods because my muscles fatigue very quickly. Walking, drying my hair w arms overhead, vocal muscles, they all are examples of things that are challenging for me.

Tricia

THank yall so much - I couldn't function before the IVIG... and there are times where I feel like I won't make it throiugh the day, but since IVIG i feel much more controlled... Though, I don't feel like i am on the right "cocktail" of meds, as I have days that worry me still.. right now I'm doing alright, but worn down from sick kiddos and other things- I have had a few days where I can't swallow my pills.. which is frustrating.. though I've been that bad before, and recovered.. so I"m just hoping it will get better again!


THat's interesting about the myositis panel and the ku antibody.. i'm not familar with that.. I tried searching the internet, but didn't see much.. I've been tested for A TON of stuff, but not this,, so i'd be interested in learning more!

Thank yall again so much!

Tricia - was your ck ever elevated? Or abnormal EMG? all those have been normal for me..

Sorry for the delay in my reply to your question!

My ck has always been normal. My emg's were mostly normal, with one abnormal one on my arm. (The face ones hurt the worst imo).

I corresponded via email with one of the main researchers of the Myositis Association, Dr. Bob/Robert Cooper. I told him of my Ku antibody with a normal ck.

He said that combination indicates an active connective tissue disease. Had the ck been elevated, then it would indicate an active Myositis.

His email was so helpful! He is featured on some myositis.org (?) Videos so I felt honored to converse with him.

Tricia

Tricia- thank you so much! That is really interesting and gives me some hope!! Did you ever have swallowing issues? Mine come and go, but after being sick with a cough/cold the past month or so my swallowing hasn't recovered like it usually does.. it got slightly better with IVIG this month, but just didn't bounce back like usual.. It's made it difficult to get my plaquenil down, and now have some bad joint pains going on as welll.

Do you have muscle atrophy? I have mild diffuse atrophy, including my hands, which freaks me out!!! Are your cranial nerves/muscles involved at all? Sorry to pick your brain, I really do appeciate your advice/info!!!! THANK YOU!