Can this happen?
Posted , 7 users are following.
For 9 yrs Ive had electric shock type pains jumping around my body, muscle cramps, muscle twitches, rashes, and chronic inflammation of my pancreas. I have occiptal neurolgia too. All my AI tests come back clear but my dr has suspected either sjrogrens or limited sclerederma. My mouth only seems dry at night but I do drink a TON of water all day (I do tend to lose my voice when I talk for a period of time), I have dry eyes but other than that nostrils etc dont seem dry.
Has anyone had negative labs and only dry eyes and night time mouth dryness with this?
0 likes, 12 replies
brenwag68 l61899
Posted
Hi,
yes i have had negative labs... I have had them test positive one minute & negative the next... I do have severe dry eyes (I now have cataracts due to this), I have blood in my nose most of the time, hard to breathe, I have extremely dry mouth (losing teeth due to exposed roots from excessive dryness) I have neuropathy, raynauds, paralysis, I have problems with my organs, uti's, kidney stones, I have now developed heart problems
brenwag68
Posted
Oops, (something happened & I did not finish 😂
I too have muscle cramps, rashes, restless leg syndrome... finding a good doctor for this is a nightmare (at least for me it has been) I hope your doctor can get to the bottom of your problems & help you... take care
margaret22116 brenwag68
Posted
brenwag68 margaret22116
Posted
Hi,
that would be great... my nose is so dry that I can hardly smell anything anymore.... thank you 😊
lily65668 brenwag68
Posted
Dry nose has been a recent addition (last couple of years) to my symptoms too. It's a nuisance isn't it? I've had a couple of bad bleeds from my left nostril during this period, though nothing like poor TJ, who also posts on these boards. I use a seawater nasal spray when I get a post-nasal drip and take bromhexine (a mucolytic) every night to try and thin out the gunk that collects in my throat while I'm sleeping and sometimes even obstructs my airway.
brenwag68 lily65668
Posted
aitarg35939 l61899
Posted
I've been diagnosed more than 20 years though I started with the dry mouth and eyes. The small-nerve peripheral neuropathy came later. Actually the muscle twitching and jerking started before any of the other symptoms, along with RLS.
Have you seen a neurologist?
lisalisa67 l61899
Posted
aitarg35939 lisalisa67
Posted
Apparently the lip biopsy isn't completely reliable, either, in that it might show you negative today but positive a year or more down the road. In the meantime no one on here who's had it describes it as a cakewalk.
Find a doc who will work with you on symptoms, and pray that you're in the lucky group that experiences remission sometimes.
brenwag68 aitarg35939
Posted
you are so true about the lip biopsy, I was diagnosed has having sjogrens through blood. My doctor wanted the lip test done anyway, the one who did my lip biopsy said before she started that I was the worse case of sjogrens she ever saw but when the test came back it showed inconclusive. My doctor said that because of the extreme dryness it left too much scar tissue in my mouth & the woman who did the test could not find enough skin without the scar tissue...
lily65668 l61899
Posted
I'm with brenwag on this one. I've had Sjogren's symptoms for over 20 years, diagnosed 13 years ago. I have a whole assortment of symptoms, including many of yours, but they generally come and go. This means I rarely have all of them at the same time and have even gone into quite long periods of almost total remission (though not recently).
The one constant through all this is that my inflammation markers are never constant! They come and go too, but not in relation to my symptoms. I can have normal bloods during a flare-up of one symptom or another, and have had raised inflammation markers during long periods of remission.
My doctor has given up on all this, and now only does full blood work once a year or even less frequently, as he says it doesn't seem to mean much. He prefers just to treat my symptoms as they arise. I hasten to add that he orders basic blood work every six months, plus thyroid tests every three months at the moment as I've recently become unstable in that department and keep having to adjust my dose of thyroxine.
I don't think it works this way for all SS sufferers, but I also know I'm not the only one who has these mysterious fluctuations which don't seem to correspond to symptoms. From reading posts on these forums, I gather the same is true of lip biopsies - which is partly why I've never had one!
I'm afraid SS just is a devious, elusive condition and there are often no concrete answers.
brenwag68 lily65668
Posted
yes lily..... I feel as you do too... my doctor does blood work every 6 months but not just for the sjogrens, he feels at some point I will come down with Lupus (I have all the symptoms & he feels I have it but will not treat until it is confirmed) my blood work one time shows sjogrens & the next, not but he says that I still have sjogrens because of the health issues I have.... it is devious!!!