Author Topic: what was your 1st thought getting SJS diagnosis?  (Read 8887 times)

Duchess

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Re: what was your 1st thought getting SJS diagnosis?
« Reply #45 on: April 13, 2012, 11:25:40 AM »
I think my first  thought was " finally".

Looking back, I had been having some symptoms for more than 20 years. Frequent dental visits and having dental caries and extractions. Being told I wasn't caring for my teeth properly...

I was having some thyroid problems with unknown etiology.

I was happy when the diagnosis was made, but also scared and at times in denial.

At least I know what I am dealing with now and can continue to adjust to my new normal.


Duchess
58 y/o, Sjogren's, Lupus, Raynaud's, Mitral Valve Repair, Asthma, Myofascial Pain. Plaquenil, Inhalers, Ibuprofen,Exovac, Vitamin D, Vitamin B-12, Omega 3, Eye Drops, Quinipril, Massage therapy.

Corella

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Re: what was your 1st thought getting SJS diagnosis?
« Reply #46 on: April 25, 2012, 07:56:13 AM »
Actually I am a bit ungrateful if I do say so myself.

As a weak positive in the blood department, my Rheumy calls me sero negative - my ANA was only 1:380 and I had a raised CRP but eyes had zero tears and mouth no saliva so with the eye specialist and dentist getting in on the action, i got my diagnosis.

I am lucky to having someone to treat the symptoms and not the bloods but whilst I was relieved initially, I now want more - for some odd reason I cant explain, I want my bloods to throw up the positive because then I will gain acceptance over it myself (I hope).

slccom

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Re: what was your 1st thought getting SJS diagnosis?
« Reply #47 on: April 25, 2012, 12:48:33 PM »
I was really relieved. I have my grandmother's body, and she had severe RA. I was so glad to have Sjogren's instead of something a lot more nasty. So far, anyhow....
 Sharon

Shelly

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Re: what was your 1st thought getting SJS diagnosis?
« Reply #48 on: April 26, 2012, 07:52:44 AM »
I was relieved, confused and scared.  I had heard of Sjogren's before because when I was a teen, I googled one of my symptoms - 'swollen salivary glands' - and Sjogren's was one of the search results but I never clicked on it so I didn't know exactly what it was. 

It's a strange experience to be diagnosed with something like Sjogren's.  I went to the dentist as a teen because my salivary gland would not stop swelling whenever I ate something and he said it was an overactive salivary gland.  I was happy with that and went on my way.  I had no idea that the joint pain and salivary gland swelling was related in some way. 

I guess it's nice to put a name to a face and to know that there are treatment options available.  When I was a teen, I began to think all of the joint pain and tendinitis was in my head.  My blood work and ultimately the diagnosis of Sjogren's confirms that it's not and that is somewhat liberating.  I think I've learned to always trust my gut.  I knew there was something wrong, but as a teenager when your parents start to doubt you, you begin to doubt yourself.  I will never doubt myself again when it comes to my health.  If I think something is wrong, I am going to trust my instinct!

aussie mum

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Re: what was your 1st thought getting SJS diagnosis?
« Reply #49 on: April 26, 2012, 01:18:11 PM »
My daughter was diagnosed at 17 and I thought "good, something has shown up in your blood, now we can fix it" 

How wrong can you be!!  I'd never heard of SJS, but knew a little bit about Lupus.

I suppose she was "lucky" that her tests came back positive. ANA 1:2580, Positive RF, ESR, SSA , CRP etc, thus avoiding the medical "it's all in your head" journey.

It breaks my heart that she probably has had the best years of her life health wise and will never feel well again.
Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D