Hi, all
Suppose I'm looking for a few suggestions, please. I've been diagnosed with Fibro about 18 mths. ago. A few months after also diagnosed with CFS but began with other symptoms sounding a lot like Sjogren's. In the last 9-12 mths. my teeth started chipping and breaking, along with cavities like crazy, and I've always taken good care of my teeth. A nurse at the family doc. mentioned Sjogren's but my blood tests came back normal. I also have a very dry mouth and throat and saliva is sticky and ropey.
Feb. 2010 I had a severe eye infection, my opthamologist diagnosed Chronic Dry Eye and put me on Restasis. She said my corneas looked like I'd taken a Brillo pad to them! :P Still blood tests are "normal". Then I began with joint pain in knees and shoulders, and swelling of my neck at collarbone and under my ears.
Sorry this is a bit long, but fast-forward to now. I mentioned my sore throat and swollen glands to the Rheumy and last week he ordered an ultrasound of my neck. It came back with some abnormalities so a CT was ordered for today and had that done. I'm hoping it's only infection instead of a cyst, tumor, etc. but my thinking is even if "just infection" why do I have an infection? And it sounds a lot like Sjogren's to me...any suggestions? I appreciate it!
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I suppose I should add that at this time I take Savella 2x day, Restasis 2X day, Nabumetone 2x day, and Trazodone at bedtime (whenever that is, lol, because I also have insomnia)
Hi Meld256,
Let me welcome you to the SJS World and family! Please do look around the board as this is a fantastic place with scads of information to be had through the search engine in the upper left hand side of the page.
I can't say if you have SJS or not as I'm not in the medical field or anything like that, but in my humble opinion, anything is possible in the world of AI's.
I'm glad to see that you have a proactive rheumy! Lucky you!
Did your doctor say what the abnormality in your neck is? The reason I ask is could it be a thyroid goiter maybe? The thyroid is a pesky little critter that can cause all kinds of problems (I had a goiter that was pressing on my windpipe which is how my journey to to SJS started).
I'll keep my fingers crossed that you get some answers soon, I know how frustrating/scary it can be.
Take care of yourself and don't forget to keep us updated, okay?
Patze
Hi Meld256 - welcome to the fold. :D
Like Patze, I am not in the medical field either - actually, none of here on this site can give you a definite Sjogren's diagnose - but, we can relate to your symptoms.
Quite a few members here have more than one autoimmune issue going on. Some, have Primary Sjogren's and no other medical issues. It's so individual - everybody is different.
I can relate to your teeth issues. My teeth would just chip and break off for no reason at all. It was my dentist who recommended I ask my primary care doctor about being tested for Sjogren's. Yep, sure enough, I tested positive through bloodwork. Do you use any products for your mouth? For instance, Biotene products are good for your mouth - they have a wide variety of products: toothpaste, mouth wash, gum, moisturizing gel, moisturizing spray, etc. You might ask your dentist if he/she has any samples for you. These can also be purchased over-the-counter at most department stores/grocery stores.
It's also not uncommon for those of us with Sjogren's to have Thyroid problems. Have you had your Thyroid checked lately? Especially, if you experience a lot of fatigue . . . once your Thyroid is outta whack, it can throw your whole system off.
Again, welcome . . hope you find lots of helpful information here.
Bucky
Welcome Meld256. 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.
I use alternatives and try to support my immune system. I have Fibromyalgia, Lupus (Butterfly), and Sjogren's (Sicca). There are a number of us with multiple AI diseases.
Hope you get the results for your CT scan quickly.
Waiting is so hard.
This board is a great place to get support.
Thank you so much, everyone, for the kind replies and encouragement! ;)
Sis: yes, waiting for the CT results is a little tough, but trying to keep those positive thoughts!
Joe, thank you! I just found the website and it does have a wealth of info.
To Bucky, I realize many of us have multiple "issues" and some overlap. Oh, joy, right?...I have had the thyroid checked and it seems fine. The teeth problems are so embarrassing to me. I've not tried any of the Biotene products but think I certainly will. Thank you for welcoming me.
Patze, yes, I am glad a have a proactive rheumy! Just started seeing him 6 mths. ago after my primary guy was getting a little frustrated, I think, after I was having more issues with pain, fatigue, etc. I honestly thought it was a bit overkill for the ultrasound but so glad he ordered it! I just thought the CFS was the cause for the gland swelling. Shows again I am not a doc! lol And I was a bit shocked it was abnormal. So far, the "abnormality" is said to be possibly a cyst or they found some nodules in the partoid salivary gland. It is a bit scary.
I'm 54, been lucky to be very healthy til 2 yrs. ago and so I'm still getting used to this "new me", not trying to hope for the "old, healthy me" but doing my best at looking at how life can be so different than what I planned but still a good and blessed life!
While my teeth do not chip, 10 years ago my teeth started to go down hill. Up until then I had 5 cavities my whole life and didn't take 1/2 as good care of my teeth as I do now. Now I get 5 cavities a year. Biotene, anticavity rinses, flossing, etc fight all you can. Unfortunately for me, it is not working at all.
As to thick saliva - milk products add to the problem. Teas do help the flow.
Have you ever had a needle biopsy in a neck lymph node? It is not as bad as it sounds. They stick a needle in there and use air to suck up cells. Then they can look at the cells under a microscope.
Also the partroid gland can get an obstruction in it and have stone mineral blockages that cause swelling/infection to back up. I know how painful it can get as I had one once that looked like a tennis ball got stuck there. Usually antibiotics are used but they can "flush" that gland though I've never had that done.
It is easier for people with weakened immune systems to get infection, etc. Either the cells are not working to capacity or they are working too durn hard and can't get to the "germ". Did you have an ANA blood test? Normal is <1:40. Antyhing over that points to your body fighting something.
Long is fine. We've all been there. The searching for what it is, the "duh" drs, the possibilities, the anxiety, etc. etc. It is a long journey.
Good luck on yours!
Thank you, Pisces24.
Ah, the teeth issues; ugh. I will fight all I can to keep what I have. I'm sorry to hear your efforts aren't working.
I've not had a needle biopsy in a neck lymph node, but I am "on a mission" to find out more about what is causing all of this. I'm willing to do whatever's necessary. My neck has been swollen slightly under my ears for 6 mths. but the left is much more tender and sore, and gotten larger in the last month. My rheumy gave me a 5-day Zithro pack a week ago and it's feeling a little better and slightly smaller.
I have had an ANA test twice in 6 mths. and shows "negative"- no value listed. Just platelets a little high and MCHC a little low but doc didn't seem concerned. Been tested for Lupus, Hepatitis, Scleroderma, RA, my SS-A and SS-B are normal. I have read many times now that one can have or be diagnosed with SJ and not have the blood tests to show it. Can be found with a lip biopsy or maybe the gland biopsy you mention? Not that I want Sjogren's of course, it just makes sense with all the symptoms I have, which is pretty much the "laundry list" as well as the eye and mouth problems. And if knowing helps me ward off any new problems or helps with symptoms I have now, I'll feel I have an answer.
I thought my rheumatologist was being a "duh" doc. last time I saw him a couple weeks ago. He kept asking how many times I woke during the night and I was trying to explain I sleep ok now (with the meds) once I finally go to sleep and he was asking, "so, once, twice, three times?" (uggh!) Then I started to say something about my medical leave but with my fogginess said something like I wasn't working and he told me "you a smart lady, there's jobs around; I'm sure you'll find something". I had not the strength or patience to explain, NO, I have a job. I am on medical leave, had short-term disabilty approved then denied for the same reason but I cannot work, they cannot by law fire me and I am not quitting! So when he ordered an ultrasound I thought he was out of his mind. Ooops! Ok, so he was right...
Thanks for your encouragement on my long journey...I know I need to use patience. I'm learning to live in the slow lane anyway so that's ok. :)
Take care,
Melinda
Ok, got the call from the rheumy's office this evening and it shows everything NORMAL on my neck tissue CT! I am soooo relieved. I asked why they thought there was something when the ultrasound was done and the answer is probably infection. Whew!!
Now since anxiety is over (yeah!) I want to find out WHY I am getting an infection along with all my other symptoms. I am on a quest! The rheumatologist won't be back til next week and I plan to call and see if we can't find out more, but understand it may be a sloooow process.
Thanks, everyone, for the kind words and encouragement!
Melinda
Melinda - that's great news!!
With that stress outta the way . . enjoy the rest of your evening! ;D
Bucky
Thank you Bucky!
Yes, that stress is over... terrible how the "not knowing" can make me so anxious. I am enjoying the evening.
Hope you have a good evening yourself!
Melinda
Hi Melinda :)
Welcome to Sjogren's world. That must have been a big relief when the biopsy came back normal. I'd press for answers as to what they thought they saw on the ultrasound though. Could it have been a thyroid nodule? They can grow and shrink and change.
As you already know it's possible to have Sjogremn's without it showing up in bloodwork. It does make getting a dx harder though.
I hope you get the answers you need.
Take care - Scottie :)
Good for you Meld, that is good news indeed!
Have a great weekend -
Patze
Thanks, Scottie and Patze. Gotta admit I was very relieved!
I definately am going to press for answers about what was showing on the ultrasound. Didn't know thyoid nodules can shrink and change. From ultrasound to CT was 2 weeks and in between I took a 5-day Zithro. the rheumy prescribed. Could that affect anything other than an infection? I need a copy of the ultrasound report and want to speak with the rheumatologist about doing some more research into all my symptoms.
I understand you can have Sjogren's without a positive blood test. I'll talk with doc more soon.
BTW, I thought the anti-inflammatory I was talking for 12 weeks wasn't doing much good. I ran out completely because of mail-order issues and after 3 days without it my knees have swollen to twice their size! I have "knee dimples" lol Today my feet and ankles are swollen badly, too. Got the local pharmacy to fill a small order tonight, so hopefully it starts helping...
Have a good weekend, everyone.
Melinda
Recurring infections sound like a weak immune system. How about trying a herbalist to strengthen your immune system? They also do accupuncture and accupressure for nerve and pain related issues.
Pegasus
Hi Melinda and welcome to Sjogrens World!
So glad to hear your good news on the neck CT! Yahoooo!
I agree....getting a copy of your tests and medical records is always a good idea in my opinion. I do it and it has proved helpful many times for myself and for other docs to see what has already been done.
Good luck in your quest for a diagnosis......but glad you are being treated for some of your symptoms already...keep us posted!
Btw....please check with your doc first about any herbs/supplements before taking them especially if you are already on medication....we don't always want to boost our immune systems with sjogrens...as that may only make matters worse. If you do have sjogrens your immune system is already working in overdrive...its just targeting the wrong things in your body to attack....just my two cents. :)
Thanks, lynnmarie219
Appreciate your welcome! Everyone here has been so encouraging..:))
I have been making sure to get copies of tests lately, especially since I have a pending SS disability case.
I agree; I will be careful before adding anything else to "the mix" of medications, whether it is vitamins, minerals, etc. I've never been one to try this, try that, and I was in good health til recently so much so that at 52 yrs. old took NO medication except a mulit-vitamin! My PCP really had to talk me into the Trazodone I take, but it's been a real help.
I feel definately there's "something up" besides fibromyalgia/CFS when I have such joint pain and swelling along with the eye and neck infections. Again, never before had any of those types of issues. Thanks for the encouragement on my quest!
Hoping you have a blessed week,
Melinda