Haven't received a Sjogren's diagnosis, but nervous about testing/outcome

[meena]

Hi Everyone -

I'm new here, but I haven't received a diagnosis yet.   

I'm nervous about taking the tests for Sjogren's, but my optometrist and ophthalmologist both think I have Sjogren's based on my medical history and the eye exams they both ran.  I recently made a trip to the ER and the ER doctor asked if I was tested for Sjogren's because of my medical history and what I was in the ER for (he kept saying what I had was an inflammatory disorder and I needed to be tested for Sjogren's as soon as possible).  (I was in the ER for chest pressure, left arm pain and slow walking/leg weakness)

I'm 29 now, but I have been battling left arm numbness, tension (now migraine) headaches, fatigue (always feeling like I have a cold or the flu) tons of dental cavities and joint pain since I was 23 or 24 years old.  My past two PCP's weren't much help.  Within the past two years I was diagnosed with dry eyes, dry mouth, ibs, GERD, and PCOS (which is enough for me, lol).  I've also had yeast infections that lasted six months at a time.  ANA's and Thyroid tests came back negative but there was a glaucoma scare when I went to the optometrist last year (that's when she said I have really dry eyes after doing as test that I can't remember).

Were any of you scared when getting tested for Sjogren's or when you received your diagnosis? I'd like to feel better before going for the tests so I don't psyche myself out...

Thanks in advance!

[quietdynamics]

Good Morning meena,

We all react different when 'things beyond our control' occur.

My first venture was to an ER, my left leg just would not 'work'.. so I hopped out to my car on my right leg.  Used Cell to call for a wheelchair from parking lot..lol.
2nd ER involved chest, and other bizarre stuff.
Stroke was investigated and I was concerned for my children.

Going to a Rheum and being tested meant a name for what was happening and a treatment protocol. It may involve referrals to other specialists. You already know this.
Taking "what we suspect" or what a General Practitioner may suspect, off the table.
In my case GP was thinking MS.. so getting that off the table was great.

So the test is also a way to exclude disease, and manage further investigation, monitoring.

Fear can be worse than a disease.
It can consume our time and quality of life with "what if's" .. that may never happen.
Time is the one thing we can never recapture.

meena.. keep pushing and stay positive.

 

[Joe S.]

Welcome. After 7 years with no answer, getting the dx was a blessing.

[meena]

Good Morning meena,

We all react different when 'things beyond our control' occur.

My first venture was to an ER, my left leg just would not 'work'.. so I hopped out to my car on my right leg.  Used Cell to call for a wheelchair from parking lot..lol.
2nd ER involved chest, and other bizarre stuff.
Stroke was investigated and I was concerned for my children.

Going to a Rheum and being tested meant a name for what was happening and a treatment protocol. It may involve referrals to other specialists. You already know this.
Taking "what we suspect" or what a General Practitioner may suspect, off the table.
In my case GP was thinking MS.. so getting that off the table was great.

So the test is also a way to exclude disease, and manage further investigation, monitoring.

Fear can be worse than a disease.
It can consume our time and quality of life with "what if's" .. that may never happen.
Time is the one thing we can never recapture.

meena.. keep pushing and stay positive.

Thank you and I will.   

I've had more than one ER visit, but my PCP thought it was either lupus or tennis elbow (because of the left arm numbness) and both were ruled out.  My ophthalmologist ran a thyroid test and it was ruled out, but she told me to find another PCP because my PCP thought that the ANA's have to be positive to have any inflammatory or autoimmune disease, which isn't true. 

I see a new PCP next week and I go for Sjogren's testing with the ophthalmologist the week after that.  I'm hoping they can solve this problem, but I'm still nervous.  This has gone on far too long, but I'm hopeful someone will figure this out.

[meena]

Welcome. After 7 years with no answer, getting the dx was a blessing.

Thank you! I'm glad to have joined this group! 

I hope I am finally blessed with an answer as well, it sucks to go through this!

[finallyadx]

Meena - welcome to the forum, sorry to had to find us, but glad you did.  You will find the members to be supportive, kind and informative. 

You do not have to be positive to have sjogrens or some other autoimmune issues - there are many members here who are seronegative but are being treated for sjogrens based on symptoms.

Yes it can be scary to get a diagnosis but it can also be a relief - as it was for me.  I had been sick for years with NO answers...once I knew what I had treatment could begin so that I could regain some of my life and functioning that I had lost to the disease.

Plaquenil has helped me with fatigue, body aches, inflammation and cevelimine has helped me with dry eyes, dry mouth and dry throat. 

I hope you are able to get some answers and start some treatment that can offer some symptom relief.

Keep us posted.

Sending positive thoughts your way.

Kim

[meena]

Meena - welcome to the forum, sorry to had to find us, but glad you did.  You will find the members to be supportive, kind and informative. 

You do not have to be positive to have sjogrens or some other autoimmune issues - there are many members here who are seronegative but are being treated for sjogrens based on symptoms.

Yes it can be scary to get a diagnosis but it can also be a relief - as it was for me.  I had been sick for years with NO answers...once I knew what I had treatment could begin so that I could regain some of my life and functioning that I had lost to the disease.

Plaquenil has helped me with fatigue, body aches, inflammation and cevelimine has helped me with dry eyes, dry mouth and dry throat. 

I hope you are able to get some answers and start some treatment that can offer some symptom relief.

Keep us posted.

Sending positive thoughts your way.

Kim

Thank you.  I'm glad to be here with support and positivity.  No one I know knows what autoimmune diseases are, let alone Sjogren's. 

My dentist, the ER doctor I saw last week and my ophthalmologist all think I have Sjogren's based on my symptoms and they encourage me to get tested.  Hopefully they are able to treat the symptoms that I have regardless of a positive or negative diagnosis.