Hi. for the past year i have been having weird issues with tingling sensations in my body.
Started out on my left arm, and it progressed to my whole body. It happens anywhere from
7-15 days at a time, and usually bi-monthly. I should have kept a journal. I always wore
contact lenses in my eyes, i took a break because i got pregnant and I need a new rx and
couldn't while pregnant. I got my new contacts last November, I couldn't wear them. I
was in pain and my eyes were red and felt like something was in them. I went back to
the eye doctor and she put dye in my eyes and said they were really dry and I needed
to buy some perservative free drops, i did and it did nothing. I always thought it was normal
to feel like something was in my eyes when I woke up in the morning. Anyway, never could
get comfortable in my contacts :(
I also get a dry cough and my throat feels dry sometimes, not always but enough.I never
thoughtthatthetingling,dry eyes,and dry throat could be connected.
My GP said "no" to MS, since I have no other symptoms other than sensory (he could still be
wrong I know) I just don't have insurance right now for the MRI.
I am 29 female. How dry is dry? My eyes are definitely messed up,but my mouth, I'mnot
sure because I just could be used to it. Thank you for any and all advice.
To Danilee from Jannalee
YUP. All your symptoms sound like Sjogren's Syndrome or maybe MS and secondary Sjogren's.
It could also be a combination of other things not related to Auto Immune disease.
Did the doc do any blood tests?
The "How dry is dry" question isn't terribly important. I have Sjogren's Syndrome and my eyes and mouth are not very dry at all.
I know I'm not helping you very much. Sorry.
I guess my advice is to keep at it till you find out why you are having the tingling sensations. They are not a normal thing and shouldn't be ignored by you or the doc.
If he tries to brush you off then find another doctor.
If you start to feel hopeless come to us for encouragement. Your future health may depend on being proactive now.
Wishing you the very best!
Thank you if you dont mind me asking, what brought you to the dr. if you didnt have dry eyes/mouth?
I should have included that info in my post duh-Ive had all normal labs bloodwork,thyroid,diabetes,b12
all that but not tested for sjogren's cuz it didn't occur to me that my eyes were dry, thought it was normal
ha!
Danilee--it's not unusual for a person to not "know their eyes are dry." Odd as this may seem, it's quite common. It's easy to blame contact lens problems, environment, and actually not feel that the eyes are dry. Sometimes this is pointed out by a doctor examining and putting in the dye stains. Just wanted you to know it isn't odd at all. Lucy
Jan of 2007 and then again 8 months later I got a benign tumor in a major salivary gland. The first one was in Submaxillary and the second one in Sublingual. Both glands were removed with golf ball sized tumors in them.
So I "Googled" the words "Chronic benign salivary gland tumors" and Sjogren's Syndrome came up. When I looked at the symptoms I found:
Dry eye and mouth (of course) and wondered like you did, "how dry is dry?" My mouth has been pretty dry since the loss of the first salivary gland and my eyes are maybe a little dry but not uncomfortable.
Jan. 2008 When I went back to the surgeon I asked him to test me for Jorgenson's Disease.
He laughed and said "Do you mean Sjogren's Syndrome? I'm sure you don't have that but I'll run the blood tests anyway."
The results came back strongly positive.
I feel extremely fortunate to get a diagnosis out of all this. So many people come up negative for years and suffer irreversible tissue damage because they didn't get treatment all that time.
My guess is that I've had Sjogren's for about 12 years. I distinctly remember suddenly feeling that there must be something in my house that was bad for me because I started to feel distinctly unwell one day and also very emotionally depressed.
My mouth became a little dry but that was a side affect from the antidepressants the psychiatrist put me on!! As the years went by I think I decided it was just all related to depression.
There are big pieces to the story I've left out including symptoms like the ones you mention. I also could not wear contact lenses and have had problems with tingling in my hands (carpal tunnel syndrome?)
If you can swing the insurance it would be prudent (in my opinion) to get the opinion of a reputable rheumatologist.
Thank you Janna. I am sorry that you have been through so much. Since I will be paying out of pocket, should I just
go straight to a rhuemy or neuro? Thankyou
eyeamdry-It's strange when you discover things youthought were normal, arent! :)
The eye dr can easily do the shirmers test to find out how dry your eyes are. If that comes out within the range for Sjogrens I would on my own measure my urine output over a 24 hour period. Get a couple of empty 2 liter coke bottles and use that to measure it. (Pee into a disposable plastic cup and then pour that into the coke bottle with a funnel). My serologicals always come out negative but my eyes are so dry I have to use autologus plasma drops to prevent corneal scarring. My GFR (kidney function test) also came out abnormal. I decided to go to a nephrologist who ran a creatinine clearance to check kidney function. When I collected my 24 hour urine I had 4 liters - normal is 1 liter. I must be drinking about 4 times the normal amount. She asked me why I was drinking so much - like I was trying to mess up the results of the creatinine clearance or I may be neurotic - some neurotic people drink too much. I told her I drink water when I am thirsty. She asked me if my mouth was dry. I had not even thought about that because it sneaks up on a person and I thought I was normal. Don't change the amount of water or fluids you normally drink. Just collect the urine and see how much you get in a 24 hr period; it won't cost you anything to do this. Maybe you will come up with one liter and that won't tell you anything, but if you collect more than say 3 liters then I would suspect that you have a dry mouth and you are drinking more than normal to compensate for it. This might not be true for all Sjogrens patients but it is in my case. Anyway, my creatinine clearance came out fine - so my kidneys are ok but I do drink an lot more water than normal because of my dry mouth. After the creatinine clearance test my dr offered to send me for the lip biopsy. I think it became clear to her that I was going to keep looking for the answers to why I was feeling so bad, regardless of what she said. The lip biopsy came out positive so I do have Sjogrens.
Tuckerdog
Yeah, you should probably go straight to one or the other (rheumy or neuro). I don't know which to recommend first.
((((((((Anyone else have an opinion on this?)))))))))