Hello! While I have never been an example of balletic grace (ha!) it seems that now I am even more of a klutz. I used to have nice long fingernails; now they are all broken down in the quick from dropping about 30 things a day. I drop things in the sink, I drop things on the floor, I drop things on my own feet! I also lose my balance a lot. About six weeks ago I tripped over nothing and crashed into a door, breaking a toe; then Friday I fell flat out on the concrete in front of my daughter's school. Still black and blue from that one. Not to mention all the times I flail around and just barely keep on my feet. I just thought maybe I was getting older, but hey, 42 isn't quite geriatric just yet! Is this related to the Sjogrens? If so, what can I do to prevent it getting worse? Is it related to the fatigue? It seems worse when I push too hard, but sometimes you just have to do what you have to do. Does anyone else experience this? Have I just lost what little coordination I ever had? Any advice would be welcome. Thanks!
I'm 22 and have the same problem. I have given up on carrying anything heavy and my family now understands this as they don't want to lose any more serving dishes. I feel like i am tripping over everything. I am constantly running into walls, literally! I am trying to find a neurologist and hopefully they can help me with my weird symptoms.
I wonder what they can do about it? Hopefully I won't get an rx for a big padded suit! Although, really, that might help me out ;D
I think that spending some quality time with a neurologist is in order, Bratbaby. Unless you have dust bunnies that have been actively tackling you, that is really not normal Sjogren's. Not wanting to scare you, but there are a lot of neurology things that really should be ruled out before you decide it is Sjogren's.
Sharon
Yes i agree too that it is not Sjogren's. It just doesn't make sense with all of the symptoms. I have had nearly every test for neuropathy and MS and luckily everything has shown up negative but it has left me with no answers. So I do want to tell you that this may happen as well, having every test and finding nothing. Bratbaby my coworkers have always joked that they wanted to buy me a helmet since i hit my head about 5-6 times a day at work. I have yet to hit it severely enough to cause a problem though.
Myasthenia Gravis is another possible diagnosis, especially if you do the dropsies mostly later in your activity day.
And it is actually treatable!
Sharon
How is Myasthenia Gravis diagnosed?
Ummm, wow. The sjogrens was diagnosed on the basis of + ANA and overall dryness and joint pain. I'm taking Plaquenil and sulfasalazine which has helped the joint pain quite a bit. It was pretty embarrassing to wipe out at the school; it was in full view of the office and the whole staff came running out and tried to make me see the nurse. Hoo boy.
I am negative for ss-a and ss-b, but I have a positive RNP (I forget the details of the rest of my lab profile.) What can I look for as far as these other disorders are concerned? Should I talk to my rheumatologist or look for a neurologist? :-\ Have to say, since I've only been on this autoimmune merry-go-round since this past March, it seems like every time I adjust to one set of circumstances, something else comes down the pike. I'm sure everybody goes through this, but it's frustrating.
Thank you for the replies!
So here's my story - I can kind of relate. My Sjs is secondary to Lupus - I also have APS and Raynauds - and I get very clumsy around a flare. It was awful for about 4 years before being diagnosed and getting treatment - now it is better, mostly.
In fact, clumsiness is the first sign I am going into a flare - I have learned to watch my diet very carefully when I get clumsy (I am gluten-free, dairy-free, soy-free, super-low-grain-intake - but sometimes I cheat, LOL). I also take some Tylenol for a day or so as soon as I notice it, and often that will head the full flare off. Not a great thing to be taking while on Mtx, but it's better than a flare!
Anyway - I guess my point is that I was very similar for several years before getting the diseases under control. They did all the brain scans - CATscans, MRIs, MRIs with contrast, etc....nothing ever came back positive for anything. As far as they could see, I was A-OK. So it was just probably CNS symptoms of the Lupus and Sjs (and possibly the APS), which they can't really detect at low levels on any kind of scan. Now I take an aspirin every day to avoid any tiny clots that may or may not have been happening.
Another possibility is that the A-I stuff is affecting your inner ear - that won't show up on scans, but it can happen. Menieres disease is pretty common, in varying forms, among autoimmune patients.
But I agree with folks above - do continue to pursue it. It's too easy to let those "low-grade" annoying symptoms run away with you - and sometimes you have to be kind of aggressive in getting some help with them, because doctors tend to just brush off what they can't explain.
Best of luck!
I am like this, I am stumbling over my own feet like one foot will stumble on a flat surface. Its getting bad starting to happen everytime I walk, and my body temp wont go above 96.5 what does that mean? I am freezing but cant get it to go up. I asked the doctor they just shrugged, meanwhile I am wondering if thats sjogrens or something else getting ready to show up. Does low body temp make you clumsy?
Low body temp is a symptom of an AI disease. It is more common in Lupus patients. I am not sure why this happens. That sucks to have your temp that low. Have you had the same temp at a dr's office?
I was just tested for Myesthenia Gravis by a blood test. It came up negative, leaving me with no answers, but I guess that's better than having MG. Lucy
They have a blood test for MG? I'll have to ask about that. I looked up myasthenia gravis and saw all of the tests that can be involved...that's a lot. I try to keep my chin up and muddle through, but it can be such a struggle some days between work and kids and trying to keep my house in some kind of order that the thought of adding appointments for lots of fairly involved testing (CT, MRI, EMG...oh my) just gets overwhelming. I'm still trying to find an ophthalmologist near me who takes my insurance and has an opening in their schedule. Bleh.
Oh well. May as well start with a simple blood test and not worry about future problems until there's a reason. Gotta keep the mind serene.
I'm learning so much from everyone on this site. I worked in healthcare for over a decade and it's amazing how little the autoimmune disorders come up. I was clueless!
Thanks again!
Bratbaby - did you see a neurologist? I had this and one of the tests they ran showed I was extremely low in Vitamin B12. While getting my B12 levels up didn't fix everything, it was at least a piece of the puzzle that I was able to resolve.
Like others I too found in flares it becomes worse - seems like you're having that experience too.
Have you had your vitamin D levels checked? Mine where incredibly low. We do not get enough sun! There are times I sort of ricocheted off the furniture and walls. Plenty of liquid helped too. Cardiologist suggests anything opaque is better than clear water.
Hi,
Vitamin d was pretty low back in march, but I started taking 2000 I U and have gotten it back to 32 (I guess normal is 30-100). I got some oral b 12 and started that, since it appears that it's impossible to overdose on it.
I definitely like the idea of a vitamin problem better than the alternatives. It seems to fit well. Fingers crossed!
Bratbaby... YOU TOO?? I thought it was just ME!! ;D
Quote from: Bratbaby on December 04, 2012, 07:25:28 PM
I just thought maybe I was getting older, but hey, 42 isn't quite geriatric just yet! Is this related to the Sjogrens? If so, what can I do to prevent it getting worse? Is it related to the fatigue? It seems worse when I push too hard, but sometimes you just have to do what you have to do. Does anyone else experience this? Have I just lost what little coordination I ever had? Any advice would be welcome. Thanks!
I hear ya Bratz... I have a long haired solid black cat named Spike. He's a mess. I trip so often I just assume my little hairy speed bump probably dived in front of me. But yes... I think it is part of it. Fatigue can play a part. I also have fibro so muscle spasms can be a part. During this latest run in, I've been falling to the side so I am taking the stairs at a snails pace and have installed a hand rail like for little ole grannies in my bathroom. I go flying though about 3 times a day regardless of flareups... It is just this new muscle weakness seems to be multiplying the flying. I've started saying "Wheeeee!" instead of panicking. Can't say it helps, but I know getting bent out of shape is more likely to cause more pain than trying to make light of it. Doc said when you aren't getting enough moisture in your body the signals your brain (which we also know is fried) send to your muscles have trouble traveling to them. Some kind of central nervous system juice??? I don't know I try not to listen to half of what Dr. Glum has to say because it's really really sad, like droopy the dog cartoon all the time. So I didn't quite get the whole thing but apparently our brains are not communicating with our muscles as well without enough of whatever unspecified fluid he was going on and on about. Maybe someone with their central processing unit not on full meltdown could explain it better, but the end result is the same.... klutzville. You can call me, Grace.
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