I have one for you all….I have some CNS involvement with the SS. Generally the tingling & numbness. Sometimes weird nerve tingles. Lately though, I seem to be just a little bit off in my coordination sometimes. It's mostly little things, like when I reach into a cabinet, I'll catch the back of my hand on the bottom of the shelf that's above what I was reaching for (like an overreach). Or actually bang my shoulder, etc on shelf edges when reaching into closets. I drop things too….as if my hands close on the object a second too late. Does anyone else get that? I have to remind myself to be very deliberate in my actions when its happening. The whole thing is kinda freaking me out.
Hi EnjoyLife,
I do have this sometimes, but mostly when I'm tired, but it seems as though I'm always tired?
I have weird issues too with dropping things, stumbling for no reason etc. when trying to talk to my rheumy I’ve come to the conclusion that as with all autoimmune diseases, none of the drs seem to have a good grasp on symptoms. Because autoimmune is elusive, no one can say for sure definite answers on a definite set of symptoms. Everyone’s body acts and reacts so differently to these diseases, there are no cookie cutter set of symptoms that go with each of the diseases that fall under the heading of “autoimmune diseases”. I feel that until more funds are made available for research, there isn’t going to be a lot of answers for those of us who have these disease processes. It’s totally frustrating for me anyway, to not be able to say to my dr, " I’ve been experiencing …, is this a symptom of my disease, or is it something else working on me. I also feel that there are so many overlapping diseases, it’s nearly impossible to pinpoint one thing specifically., just my thought and my frustration.
WOW! Did I ever learn a lot from that ! Kaz, you did it again! Thanks for the fantastic info!
BTW, I have REFUSED a spinal tap more than once! NO MORE invasive tests for me!
Wow, Kaz. Thank you so much. I have been taking flaxseed for a couple years now, as suggested by my eye doc. I take biotin which I started because my hair and nails are so brittle but the rheumy was happy to hear it. I actually started on D3 just about two weeks ago because of info you posted in another discussion. The combinations with the addition of Plaquenil seem to be helping the fatigue and the worst of the pain, which is a nice change.
I still run but I gave up the martial arts (14 years worth) partly because of the pain and partly because if you are off even a little (at my level) you can really hurt someone…..it scared me. It wouldn't have occurred to me to see a neuro, so thanks for that. I remember reading something when I was first diagnosed that SS can mimic MS at times. I must say the idea scares me but I'd rather address it than let it get worse if I can do anything for it. At the moment, I have Primary SS but it seems that you never know what's coming down the road with this stuff.
You mentioned balance. i was just considering yoga to replace my MA as a way to stay toned and flexible. Maybe it will help with that too.
Thanks Wendy and SK too….it helps to know that others feel the same. I always wonder if that so-called specialist hadn't blown me off all those years ago, if some of the problems I have now could've been delayed or off-set. Who knows? It is also a little weird how many odd symptoms are related to this…seemingly abstract issues and I hear "yep, that's the SS". No win..LOL
I started to drop things a few years ago. Small things at first but gradually the items have got larger. I thought it was caused by my osteoarthritis so had not connected it with SS. Now I know.
I also get a tingling sensation in my right arm and have to keep moving it or rubbing it. I get it when in the shower and I cannot stand the water touching my arm. Agony at times though it doesn't happen regularly I am glad to say. The feeling is very similar to the sensations I get in my legs due to Ekbom Syndrome (Restless Legs) which I have suffered from all my life.
I get a tightness in my chest and have dry cough but nothing showed up on an x-ray so I am going for a CT Scan on Wednesday. No idea what causes it. Maybe the SS?
Does this ring a bell with anyone?
I get the numbness & tingling in the hands and feet too. I also get an odd feeling like my forearms are burning from the inside.
The dry cough is very common with SS. I get that from time to time. same with the hoarse voice. Keep us posted on what the doc says though
I too have constant hoarsness, and cough. Always clearing my throat, to no avail. I also get this burning in my muscles. Sometimes arms, legs and my back. It only lasts a few seconds.
Wow! I have the same issue with dropping stuff all of the time. It used to get me so frustrated! My coordination is really whacked out! Before I was diagnosed, I was always afraid that if I was ever stopped by a cop that thought I was drunk, I'd totally fail the walking straight on a line, closing my eyes and touching my nose, etc. I would flunk all of the tests and not have a drip of alcohol in me.
Wendy8091 said:
I have weird issues too with dropping things, stumbling for no reason etc. when trying to talk to my rheumy I've come to the conclusion that as with all autoimmune diseases, none of the drs seem to have a good grasp on symptoms. Because autoimmune is elusive, no one can say for sure definite answers on a definite set of symptoms. Everyone's body acts and reacts so differently to these diseases, there are no cookie cutter set of symptoms that go with each of the diseases that fall under the heading of "autoimmune diseases". I feel that until more funds are made available for research, there isn't going to be a lot of answers for those of us who have these disease processes. It's totally frustrating for me anyway, to not be able to say to my dr, " I've been experiencing ....., is this a symptom of my disease, or is it something else working on me. I also feel that there are so many overlapping diseases, it's nearly impossible to pinpoint one thing specifically., just my thought and my frustration.
LOL Confused! I have had the very same thought….that I can't keep my balance on one foot anymore and would they believe me if I was trying to explain it. Glad I'm not the only one that worries about weird things like that.