I haven't been officially diagnosed yet, but finally found a rheumatologist who is trying, and the first to mention Sjogrens. She asked on my first visit if I had dry eyes or mouth and I said no. However, a couple of weeks before seeing her, I had three days of my right eye feeling gritty, blurry, and just aggravated. I didn't think that was important to tell her, but the week after seeing her it happened again for 5 days then went away. Additionally, I'm struggling to sing. My hubby and I do a 2-piece band and when I practice my voice goes after only 5-6 songs and I can't hit the notes I used to hit. I didn't associate this with my joint aches and fatigue. I picked up my test results and my RF was positive (35) and my MCH was low, but just under normal. My c4 was low as well, although c3 was normal. All the antibodies she tested were normal. Is this what you guys mean by seronegative? I have been diagnosed and undiagnosed with Rheumatoid since I was 10 years old, but have never had swelling and heat in my joints, just pain. Do you guys think it could be SS? Not asking for a medical opinion, just based on your own symptoms/experiences. Oh, and I have pain and stinging in my fingers when it's cold as well as they turn a bit bluish. I had surgery for neuropathy in my hands and feet 6 months ago and the new rheumy had a fit that someone cut on me for this.
Hi Stickgal :)
Welcome to Sjogren's world. It's possible to have SjS and not have the bloodwork but it's also possible for other things to cause dryness. Have you had your thyroid checked out? It can impact on your voice.
SjS is amazingly individual. It has wrecked some people's singing voices. I still go singing once a week with a group and it hasn't stopped me, yet my mouth does get amazingly dry. It doesn't seem to have gone for my vocal chords though.
I would try to see and ENT doctor if I were you. Tell him about the singing and see if he can find a reson why you are struggling.
Take care - Scottie :)
Stickgal, It sounds like it is time to head for the studio. You could have Raynaulds and Sjogrens. How do dehydrated cherries affect your arthritis?
I've never had a dhyrated cherry. I see the rheumatologist on the 10th for a review of my test results. I am having a dexascan and nerve conduction test as well before I see her. I am sort of excited about getting annswers. It's been a long 20 years
Hi stickgal,
Welcome to the forum! ;)
I hope you find great info. and friendly people here. Sorry to hear you're having these issues, but good to know you have a rhuematologist who is helping you get some answers. That's so important.
We're not doctors, but many of the symptoms you state sound a lot like Sjogren's. The eye grittiness and blurring is a sign of dryness, just as a problem with singing. My dry mouth and throat really affect my speaking voice. SJS can cause joint pain and fatigue, and there are several other overlapping conditions that can cause those, too. Sometimes we have a bit of a mixed bag of things. (lucky, aren't we?) :P In regard to that, your fingers turning bluish and stinging can be Raynauds. Not as scary as it sounds, usually it's more of a nuisance and not disabling in any way. It's a problem with the blood flow to your extremities and is common alongside conditions like Sjogren's.
Yes, seronegative means that you have no blood markers to prove Sjogren's. I am one of these people, along with an estimated 30-40% of Sjogren's patients who show nothing at all in any test. I was diagnosed because if you read the laundry list of symptoms, I have almost every single one.
I wish you luck on your journey for answers. I know it can be kind of exciting to finally find out what is causing issues you've had for a long time. As someone here says, it's very much like a puzzle. Some of it makes no sense until all the parts come together; you look back and think, oh yeah, that's been an issue, this is all related.
Feel free to ask anything at all. Someone will have some answers. We all help one another in any way. ;)
take care,
Melinda
Hi Stickgal,
Let me also welcome you to the SJS World and family! Please look around the board as you'll find a lot of answers for your questions by using the search engine in the upper left hand side of this page. If you don't find what you're looking for, don't be shy and ask away as there is usually someone about that just might be able to help.
I'm another one that is totally sero negative, and like Melinda, I have a long laundry list of symptoms as well. And I'm very fortunate that I have a rheumy that treats my symptoms and not my negative blood work.
Good luck with the rheumy and I'll keep my fingers crossed that she treats your symptoms and not wait until you have positive blood work.
Take care now -
Patze
Do not be surprised if you still have no answers after the 10th. Take a deep breath, rant or rave. Few Drs.will Dx on symptoms but some times that is all that shows up. Try reading spoon theory. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
Very few things surprise me these days, to be honest. At almost 50, I've seen a lot. I think the fact that she's interested enough to run a zillion tests says a lot about her. I have a dexascan and nerve conduction test prior to seeing her, and am going to ask for a Schmermer (sp?) if she even suspects it could be Sjogrens.
Joe: You were right. OK, so here's the drill. Had nerve conduction tests in hands and feet today..no PN. Blood work showed very low Vitamin D, positive RF (this has been true for last two years), low c4, but normal c3. Rheumy says doesn't know...SJS tests were negative, but could be SJS or could be rheumatoid (nontraditional presentation), or both. I asked if she thought it could be nothing...that maybe I'm just a hypochondriac...hyperchondriac? She says no, def. something autoimmune, but couldn't name it. Says it's common that you just can't meet all the diagnostic criteria <sigh>. Seemed a bit annoyed that I wanted definitive answers and she had none. She is sending me to an ENT for lip biopsy and to ophthamologist for dry eye testing. But, says I may just have to accept that I have a disease with no sure name. She did put me on Plaquenil and gave me Elavil (good call Irish), as well as a Vitamin D supplement. Any ideas on the Vitamin D issue? Haven't read anything associating it with autoimmune issues. Anyway, that's the story for now. Am trying to just get back to my life (helped by going off the Lyrica for sure!) and stop obsessing. Thank you all again for the helpful words!
The following are some over the counter supplements that I take. I suggest that you do your own research and talk with your health care professional.
Centrum Silver - This was suggested by the pain clinic I went to
Magnesium - this helps with muscle pain and spasms. You can use Magnesium oil externally to provide spot treatments
Flaxseed - since I can not take fish oil I use this for Omega 3's
Inositol - reduces sensitivity to weather changes
Goldenseal - I started this for blood sugars but have since read articles that suggest it helps with AI diseases
D3 - This appears to be what your body is looking for when you are low on D
ALA (Alpha Lipoic Acid) - This is like a super vitamin C on steroids. It cleans junk from your system. Helps with Neuropathies.
ALC (Acetyl L Carnitine) - Repairs damage to the mitochondria DNA of your cells.
Aloe - Helps with digestion issues
Reiki - Helps to heal many issues
Reflexology - Triggers endorphin release to targeted areas.
Meditation - Breathe in "I am", Breathe out "calm" Helps with pain and insomnia
Electro-herbalism - http://www.chakraforce.com/Tonations.html seems to work well 3-5 min / tone 2-5 times per day
Polar fleece "mumps" scarf over the top of my head helps control infections and moisture over night.
Thanks...am ready to try anything for relaxation. Don't know if it's coming off the Lyrica, or starting the Plaquenil, but nerves were jumpy jumpy last night...tried to bear with it and let them calm, but finally had to take something to sleep...oyyyy...
Find a comfortable position. Close your eyes. With your eyes closed, look to the top of your head. With calm rolling breaths like waves on the ocean:
Breathe in and think, "I am"...
Breathe out and think, "calm"...
Repeat for up to 15 minutes