New member - waiting for diagnosis

[Wallflower]

Hi! I'm a 39 year old female and I began having symptoms about 4 years ago.  I've suspected Sjogrens for a few years thanks to google, but I only recently sought medical attention. 

My first symptom was swollen and painful parotid glands.  I saw a Dr not knowing what it was.  I learned to deal with it.  I have times where they are good for a few weeks and then periods where my face swells up and it's really bad. 

My second symptom was bad joint pain.  Usually in my hands, sometimes in my feet.  Thankfully I don't get this symptom as frequent as the salivary glands.  I have long periods with no issues.

After those 2 symptoms my mouth got really dry, though in retrospect it's always been dry.  Same with my eyes.  I've always had issues with my contacts and in reality it was never my contacts. Dry throat, hoarseness, nose being dry, etc.

Recently I have begun to have a lot of tingling and weird feelings in my hands, feet and sometimes my face.  In addition to those very specific things I have symptoms that I can't quite pinpoint and wonder if I'm imagining.  Fatigue, dizziness, shortness of breath, an all over ache and flu like feeling.  These all come and go.  I certainly have more good days than bad. 

I finally sought out a diagnosis this past week.  He said it sounds very much like Sjogrens, but he did a bunch of blood work to rule out other things.  If nothing definite comes back from the test he said he would call it Sjogrens because he feels like that is what it is. 

I don't have all the test results back yet, but I did get some that were put in my file.  So far the biggest abnormality I saw was my folate being very, very high and B12 being a bit low.  That's only based on the ranges provided in the test results so I'm not sure I can interpret that on my own..  My folate seem very high but maybe I'm misunderstanding the ranges.  I googled of course and came up with pernicious anemia and it certainly fits a lot of my symptoms. 

The other thing out of range was my monocytes.  Everything else seemed normal so far.  The Sjogrens antibodies test hasn't come back yet. 

[Joe S.]

Sjogren's is typically a diagnosis of eliminations. It typically takes 7 to 12 years for a diagnosis. Welcome to our forum. Some of us are diagnosed on symptoms.

I hope that you get a valid diagnosis no matter what you have. You can read some of our signatures to see what we are taking. If you choose to try something check first for counter indications, drug interactions and side effects.

I find that a mumps scarf helps with the gland issues in my head. I use meditation, reflexology, reiki and toneations to  help with immediate symptoms. I use medication and supplements to help with long term issues.

[Wallflower]

My results for the Sjogren's antibodies came back today and it was positive.  So now I have an answer.  The message from the Dr.  said that was positive and my ANA was positive so his diagnosis is Sjogrens.  His suggestion was to follow up as needed. 

[cccourt1942]

No offer of Rx for oral dryness??

[SunshineDaydream]

No offer of Rx for oral dryness??

+1 on this. Inquire about Evoxac, Salagen or their generic equivalents if dry mouth becomes bothersome. Also good as a preventative to help stave off dental problems. Saliva is important for oral hygiene as well as digestion.

Plaquenil can help with joint pain and fatigue if those symptoms become troublesome or overwhelming.

An optometrist or ophthalmologist can help in a variety of ways with dry eye symptoms - prescription eye drops and/or punctal plugs.

Here's a thread with recommendations for helpful OTC items for various symptoms. https://sjogrensworld.org/index.php?topic=10139.0

[Carolina]

After I developed the symptoms of Sjogren's, I continued to experience deterioration in many parts of my body.

I developed severe anemia, which improved when treated with Iron tablets, but returned as soon as I discontinued the Iron at my doctor's request.  After three episodes of this improvement and relapse, I decided to take Iron all of the time..  I am not anemic and have normal iron as long as I take Iron tablets twice a day.

Severe Anemia is very debilitating.  All of the types of anemia were ruled out, by the way.  I just don't store iron in my liver, I guess so I need to take it regularly.

My diet is a very excellent one, so that was not the problem.

My organs and systems have continued to deteriorate since the onset of the severe Sjogren's symptoms in 2002.   It isn't fun, but I do cope.  It turns out to be a full time job...good thing I'm retired!

Regards,  Elaine

[Wallflower]

Oddly (or maybe not) I'm not having too many issues with dryness right now. My main issue currently is a lot of tingling, numbess, weakness in my hands, feet and face.  I also have episodes where I just feel awful for a few hours.  Total exhaustion, headache, dizziness.  I've had small bouts of this but the past few weeks have been the worst. 

My symptoms seem to jump around.  Some things improve or go away completely, but something new replaces it.  Right now I'm wishing for some dry mouth and eyes instead of these nerves problems.

Am I crazy to feel like my symptoms are so much worse right before I start my period? Is this a real thing or in my head?