Hi everyone! My name is Jessica, and I'm 26 years old. I found this group today after a visit with an ENT who suggested I might have Sjogren's yesterday. I'd like to take a few minutes to tell my story to see if anyone can give me any insight into this. I've been accused of being "too wordy" so I apologize in advance if this turns out to be longer than what I intend.
In 2008, I started having severe muscle cramps, and joint pain. In between doctor's visits to get this treated, I came across multiple sclerosis, and realized this explained all of my symptoms and a few other "quirks" about me. I discussed this with the neurologist I was referred to, and she decided to run an MRI to test for MS. The MRI showed nothing for MS, but did show a "spot" on my left paratoid gland. She sent me to an ENT (the same one I saw yesterday) who ordered a CT scan. The CT scan showed NOTHING! It was just as if a spot had never been on the gland. The ENT dismissed it as an infection, ran a followup CT 3 months later, and still nothing. He said don't worry about it unless I have any more problems then to give him a call.
Over time, my muscle/joint problems slowly faded. I still have trouble with them, but not as severe as the initial onset in 2008. They've never been the same though since before the initial onset.
Fast forward to about a month ago. My right paratoid gland became swollen and infected. He gave me an antibiotic and brought me back in for a follow up, which was yesterday. He said he had went back and looked at my file from 2008, and realized it is very unusual for someone to get recurrent paratoid gland infections, so he thinks now is the time to find out why I am getting these infections. We have another CT scan scheduled for this Friday, 9/24/10. If that does not show any "spots" we are going to go to a rheumatologist.
During my visits for the infection on the right paratoid gland, I told him I noticed I have been having dry mouth which is extremely unusual for me. My dentist will testify that I have one of the wettest mouths she knows of, so for me to have dry mouth, is rather significant. He also asked me if I ever have any joint pain, and I explained to him about my problems in 2008. Then it occurred to me ? the past few days, my muscles/joints have been repeating the same problems I had in 2008. It seems possible then, the same culprit (such as Sjogren?s) could be causing my problems with the paratoid gland as well as the muscles/joints, because it is appearing all of the problems seem to flare up at the same time. The only difference between 2008 and now is that I am experiencing dry mouth (that even seems to come and go within the last few days). I wouldn?t ever say my eyes go dry, but a lot of times it feels like there is something in my eye that I cannot find. So, is it possible the Sjogren?s symptoms can wax and wane like this? Also, do you think it might be possible that it could be Sjogren?s I have ? do these symptoms coincide with that of Sjogren?s? I?m wondering if my neurologist and other doctors overlooked this because I did not have a problem with dry mouth then. I?ve also had really dry skin for several years also. I believe they did blood work then on rheumatoid levels, and it all appeared to be normal, as far as I can remember.
So, if my ENT does refer me on to a rheumatologist, what can I expect in the near future? Is this going to be an expensive disease to diagnose? I?m on an extremely tight budget, and don?t really have much room for medical expenses, but I believe in treating it now, is a lot cheaper than letting it get worse and treating it then. I tend to have a history of doctor?s not being able to explain my problems, and brush me off as stress being the cause, and then I?m left with a ton of medical bills with no answer, and I?m not currently in a situation that can afford that. Is this a rare disease? I?m an identical twin, so should I be considering getting her to the doctor if I am diagnosed with this, as she presents some of the same symptoms I do, although hers are milder. Also, I have a second cousin who has Lupus, and my mom was tested for Lupus when I was a child, is this worth mentioning to the doctor? There are so many thoughts running through my head, that I cannot remember to get them all wrote here, so I?ll probably be posting more as I can think of them.
Hi Jessica,
Welcome. It's all a lot to take in all at once, isn't it? Many of us have had various pieces to the puzzle through the years and then what seems like, all of a sudden, everything falls into place. Some members have taken years to get the Sjogren's diagnose. Some have definite Sjogren's blood work, others have the symptoms, but no blood work to back it up - yet, their doctors treat them based on their symptoms.
Yes, I think you should mention about Lupus in your family to your doctor. Some members have family members with Sjogren's, some don't. It's such an individual disease. No one in my family has Sjogren's - although, I'm thinking my Mom might have had it, but never knew it.
There are four million people worldwide who have Sjogren's (although, if the truth be known, I bet it's more than that!). It affects mostly women - but, it does affect men too, just not as often compared to women. We even have some young children as members - so, Sjogren's knows no age limit or gender.
As you think of things to ask your doctor(s), perhaps keep a notebook or journal or something - it's difficult to always remember everything you wanted to mention at an appointment. Also, keep track of any "symptoms" you have - how long they last, if anything helps it (heat, cold, medicine, rest, etc.).
Just so you know, it can take up to three months before you might get in to see a Rheumatologist. This seems to be the "normal" time frame. I don't know, they must be in short demand or something. ::)
Have you ever put any eye drops in? You might find your eyes are dryer than you think. Drops always feel so good to me.
Is this an expensive disease? Well, yes - it can be. With all the drops, lotions and potions and pills to help manage Sjogren's, plus the doctor visits, it can add up. But as you said, at least if you address the problem now, maybe you can head off some of this and keep it manageable. Some have very few "symptoms" and it ends up just being an inconvenience to them, others are more involved - it's so individual. Also, be sure and ask your doctors for samples - that helps with costs too. ;D
Take care Jessica - hope you find this site useful to you and full of information to help you on this Sjogren's road.
Bucky
Jessica, Welcome to Sjoren's World. :)
You might want to put a specific word in the Search box above which is just out from Home icon and read while waiting for other Sjoggie friends to reply. ;)
Joy
Welcome Jessica. There is a lot of good information to be found on this website. Some of us have posted what we are taking and what we have in our signatures to help others.
You can only get a diagnosis (Dx) of Sjogren's from a doctor. Some are good some are bad. Often you will get referred to many before a Dx is given. Auto Immune (AI) diseases are often multiples. There will be a lot of blood work and may be some biopsies.
I got diagnosed from the symptoms I had and some blood tests. I had ones for ANA, SS-A and SS-B. The ANA # shows if your body is fighting any infection. SS-A and SS-B target specifically on Sjogrens. Not sure what other ones I had that targeted anything but the #s on those tests were SO High for me that there was no doubt.
I get occasional partroid gland swelling too. It can be a blockage or infection backing up. Do you have an sinus issues? I do sinus flushing with the Netti Pot and it has Way cut down on my sinus infections (from 5-7 per yr doozies to 2-3 per yr and very mild). Dry nasal passaages just can't filter right. It is cheap - just distilled water and sea salt "NOT regular salt".
I feel you "anxiety" about trying to get a firm diagnosis. SJS is hard to diagnoses with most drs. I went to a teaching hospital and saw an immunologist there who diagnosed me ASAP. I would HEARTIALLY recommend a teaching hospital over any individual so called specialists. The one I go to also gives you a year to pay your bill with no interest.
I have to say some of your "episodes" sound like Sjogrens flares too.
Hi Jessica,
Let me also welcome you to the SJS World and family! Please keep looking around the board by using the search engine in the upper left side of this page. And if you can't find what you're looking for, don't be bashful and post.
I see the others have given you some good advise and there's not much more that I can add.
Take care of yourself -
Patze
Hi Jessica and welcome to Sjogrens World!
Yes some of your symptoms sure sound like they could be autoimmune related. Sjogrens, lupus, MS all share so many common symptoms that its not uncommon to take awhile to get diagnosed as the doctors have to test and re-test to insure they are diagnosing correctly. Since it can take a while...its important to find a doctor to treat the symptoms you have even if you don't have a definite name for it just yet.
Hope your CT scan went well...keep us posted! And in the meantime keep coming back here for as much information, support, and friendship as you want! ;D
Wow! Thanks gang for such a warm welcome!
So, are "flare ups" consistent with Sjogren's? I'm concerned that if I go to a doctor when the flare up has faded, he won't see anything. If I'm feeling fine, but if I really do have Sjogren's, will the blood work still show it even though I'm not having a flare up at the time?
Also, would purple legs be a symptom of Sjogren's? I moved apartments over the weekend, and it was from a 2nd floor apt at the old place to a 2nd floor at the new place. Naturally, I was really sore from all of the moving, but I noticed my legs turned a purplish tint for a couple of days. It wasn't tingling or numb or anything, just purple.
I am getting so anxious for my doctor's appointment. I imagine that anticipation/patience is one of the hardest parts of this.