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tripLexie
04-09-2012, 10:52 AM
Sorry to post another thread on the symptoms forum, but I forgot to include it in the other and it (seems to be) a totally different issue.

I'm having some issues with leg weakness. It comes on quite suddenly, though it is not severe enough to make me fall or anything. The other day I was driving and and all of a sudden my legs had a faint feeling. Like from the waist down, I was about to pass out. It lasted about an hour or so. I was driving, and still able to drive obviously, but it was quite scary.

I mentioned this on the MCTD group, and a lot of them say they get this when their myositis is active, The doc mentioned a possibility of the polymyosits, I just didn't think I was having symptoms. I guess I am now.

Thoughts?

Mica
04-09-2012, 12:03 PM
Yes I get this all the time, it's now become so bad that I can't drive myself or do any grocery shopping by myself. Though I have never really brought it up with my doctor because she never listens to me anyway but id imagine that would happen with lupus people.

ritzbit2
04-09-2012, 01:13 PM
One of my more troubling problems aside from my really bad raynauds is the muscle weakness. I get it in the legs also but its a lot worse in my arms. I was dx'd with myositis while flaring last year, and many of my flare markers are markers of muscle inflammation (CPK, C3, C4, LDH). I'm pretty sure those are all muscle related things, I know the CPK is. Rest as much as possible when your muscles act up. I know doing too much is always bad when anything is acting up disease related but I have found its really easy to makes the muscles feel worse really easily at least for me. My arms are acting up lately but not that bad but I can tell when they are starting to get bad when it starts to hurt to try to put my hair up or drive because they will feel really worn out really easily by doing normal simple things. My bf thought I was joking when I said I was tired from trying to put my hair up in a bun when I stayed the night at his house over the weekend. It comes and goes and for me isn't always related to a lupus flare. I don't test positive for the polymyositis antibody though.

steve.b
04-09-2012, 08:34 PM
i too have the same problem.

when i spoke to my rhuemy....
his explenation was that it was poor circulation.
because the blood flow was not carrying enough oxygen, my limbs would start to fall asleep.
they would not fully go to sleep just slow down due to poor oxygen levels.

magistramarla
04-09-2012, 08:44 PM
Lexie and others,
Do any of you have stiff, "hypertonic" muscles and muscle spasms along with the weakness and numbness?
My leg spasms often happen unexpectedly and pull me to the floor. My foot gets so numb that it is really hard to tell how hard I'm pushing on the brake or accelerator. I don't dare drive very far from home anymore. My biggest worry is that the leg will spasm suddenly when I'm stopped at a red light, so I avoid the busier streets.
I have three possibilities for these symptoms. 1) It's yet another of the joys of having Lupus/Sjogrens. 2) It's the Avascular Necrosis coming back or
3) My otolaryngologist is right and it's Spastic Paraplegia. I just wish that I could find out which it is and if anything can help.
Hugs,
Marla

ritzbit2
04-10-2012, 05:57 AM
I get really painful cramps in my hands and feet sometimes. The ones in my feet happen out of nowhere and make my toes curl up and if I'm standing when it happens it puts me on the floor. I've only had one bad time while driving home from class one day thankfully. I almost had to pull over. I could barely steer all the sudden and my legs went tingly, weak, then my foot cramped.

tripLexie
04-10-2012, 07:43 AM
I just get the 'zingers'. The shooting pains, and they happen anywhere. I don't fall to the floor, or does it impact my driving, but they do make me cringe. I hope they dont start to interfere with my driving. Mentioning all this to rheum. next week!

ritzbit2
04-10-2012, 08:43 AM
If you get any answers let me know because as you can probably guess from how I talk about my rheum, she doesn't think my cramps or tingling is anything lupus related. For me the actual weakness is myositis though and the muscle inflammation shows up in my blood work frequently but I don't know what kind of criteria there is for polymyositis vs myositis. All I know if I don't have th Jo-1 antibody that is seen in polymyositis.

tripLexie
04-10-2012, 09:29 AM
Did you ever get your anti-RNP levels checked? I can't remember if you told me that or not. I'm no doc, but my rheum said that the high RNP levels indicate a possibilty of Mixed Connective Tissue Disease which includes Lupus, Scleroderma, and either polymyositis or dermamyositis. I don't have the anti-jo1 and he's def. looking into the MCTD. Please get a new rheumy! Yours sounds like she doesn't give a crap about anything you say! I hate to hear about the similar symptoms your having and not getting the attention you need.

ritzbit2
04-10-2012, 10:09 AM
There wasn't a range listed for my RNP so I don't know if its high. It was 256. From what I've read it sounds like they treat them about the same medication wise anyway so I'm not sure what they would even do differently if they confirmed MCTD. In the same breath I'm wondering why I'm even feeling sick again on and off lately because I'm on so many meds that have mostly been keeping me flare free for a few months now.

magistramarla
04-10-2012, 03:56 PM
Ladies,
Because of this conversation, I got out the lab report that my great rheumy gave me in 2009.
My RNP was 117 and that was flagged as High. The JO-1 antibody was 18 and also flagged as high.
I had both of the antibodies for Sjogren's flagged - SSA 159 and SSB 22
The Smith antibody, which I think indicates Lupus, was flagged - 28

I'm definitely seeing why my doc in Texas said MCTD. The thing for me is that my current rheumy wants to dismiss all of those results because my more recent labs don't show all of that. (Can you say meds are working? - Duh!)
When I asked about polymyositis or myositis, she just dismissed it. (She thinks I read too much.)
So now you've got me wondering about those again!

I probably won't get good answers until I move back to San Antonio - sigh!
Hugs,
Marla

ritzbit2
04-10-2012, 05:31 PM
OMG! I would demand that she look at them again! Everything I have seen about polymyositis and MCTD and the like has to do with those antibodies. I would tell her that you aren't satisfied with what she thinks and I would look at some actual medical reports online that talk about these things so she can't dismiss them. I have read articles about this online from medical journals. I tested positive for SSA, RNP, Sm, and ANA when I was first diagnosed. The results just say "positive" though and give the values so I don't know what was considered high. But if your 117 was high for RNP I would assume my 256 was high too lol I think the reason my rheum will probably never say polymyositis is because of the antibody, even though it basically sounds like the difference between myositis and polymyositis is one is a one time thing and the other is a recurring problem. I would definately ask about those tests again. Even if they are down now that would be expected with meds. Mine are still positive but all are much lower than before I was dx'd.