New to Sjorgens, a few questions

Diane, how much water do you drink every day? My only suggestion on that burning tongue is unsweetened applesauce, cold from the fridge, and hold a spoonful on your tongue as l9ng as you can stand it.

I went through a period of several years after my accident with a lot of twitching here and there. Started gabapentin a year or 2 later for other reasons & don't have so much trouble. Things still jerk occasionally, even in my abdomen, and I'll get short vibrations here and there, but nothing like before. Gabapentin to some extent acts as a neuro-muscular blocker.

I can sympathise with the twitching, Diane. I've had it for a couple of years now. As neuro was my speciality when I was a nurse, I inevitably suspected the worst (MS etc.) when it first started. However, I've discovered it varies from time to time, but hasn't actually got worse over the years. It's always worse when I'm stressed.

It's usually intentional - i.e. most likely to occur in my arms when I stretch out to pick up something etc. At the outset I found it was happening a lot in my thighs, even causing me to fall on occasion. However, the latter only lasted a few months. I still occasionally get those unexpected muscle jerks in my arms, but it's much better now, so I've come to the conclusion it's nothing to worry about.

Give it time, and try not to worry too much about it. A lot of autoimmune symptoms come and go.

I am constantly drinking water and power ade As soon as I stop drinking it burns bad. Gp said today use scope not Listerine use scope in water and rinse mouth freg I am still going crazy I don't have thrush so I don't know why burning

If I were you I wouldn't use either of those mouth washes but would use something dry-mouth specific. It should be alcohol-free and if possible sweetened with xylitol.

It sounds like you're drinking a sports drink that you mix up yourself? Here in the States some of those are good and some are not. You might do better by diluting them more than half. There are other drinks which might help more but I don't know what country you're in.

Yes I take any suggestion because nothing is doing good for my tongue and mouth  Gp told me a Gatorade  or something with mineral and things because I don't eat much.  I am getting dizzy all the time When I drink a 32 oz a day with 48oz of water I am not dizzy So I drink PowerAde with the sugar because many times my sugar is low.  All I know if all the bloodwork he is drawing tomorrow for all so call connective tissue did It better show something I am tired of 6 Dr's doing nothing. I trust my Gp when I say to him please find out what is wrong. He does listen to me.  He said he will do Lupus etc I don't know what is the diff each blood work My ANA  SSA SSB have been neg  Maybe I am a going crazy 

Diane-

First of all, you are def not crazy!  They just haven’t yet put a name to your symptoms. Hang in there. It is very frustrating to know that something is very wrong and medical experts can’t find out what it is. Something that helped my “burning” sensation on my tongue: XyliMelts - I use all day and 2 at night (the mints stick to your teeth). I bought mine from Amazon. I use a toothpaste and a mouthwash with xylitol in them and I constantly chew Trident which contains xylitol. All together they seem to help in creating a bit of saliva in my mouth and decreased the burning sensation on my tongue somewhat. 

Just by the way, my ANA & inflammatory markers are all negative even though we can actually see and feel inflammation ...  just keep faith that your DR will find out what’s going on. 

Can you try the chilled applesauce? I suggested unsweetened because so many here avoid sugar & I prefer it, but you need the calories so it might as well be sweetened.

Gatorade & other sport drinks do make liquids more bioavailable to our mucus membranes so long as the formulae exclude the oils which makers started adding a while back. Was your tongue burning so much before you started on the gatorade?

This does make us all feel crazy, your reaction is normal tho it sure doesn't feel fun. So many folks here have been made to feel a little nuts for a while by all the conflicting doctor's stories. At least you've got a good gp! That is worth so much.

I hope you get a clear diagnosis from this round of tests.

I had VRE in my ears No Dr listened to me. I had all kinds of antibiotics hospitalizations  I also had Mastoid removed. I knew there was something wrong It got to the point I couldn't walk  Finally after many tubes place in ears My Gp got a infectious Dr they finally cultured and found VRE.  I feel like that time I know something wrong with me My mouth really bad no taste buds burning and very thick white mucus in the morning the worse when I wake up.  No one listening again  yester the Rheumo Dr's office called and they said she doesn't take my insurance this year. what else??/. I went for a shot in my right hip today which was very painful. then went to Gp for the blood work we will see 

Connie, xylitol is one of several sweeteners in trident. There are other gums which only use xylitol.

We do have to be careful with these gums as these sweeteners are poison to our dogs. I had a dog who would snatch my trident pack if I wasn't looking, back when I still used that brand. Fortunately it was a big dog and never suffered harm, but smaller dogs might. Yes, I learned to be much more careful about where I left gum packets & guarded the trash as the used gum seemed equally appealing.