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Discussion Starter · #1 ·
Hi All,

I was just officially diagnosed with Lupus and Sjogrens Syndrome yesterday. I have a 21 year old son and a 14 year old daughter. I had 8 miscarriages in between the two of them. Thankfully I had an OB/GYN at the time that ran an Anticardiolipid/ Antiphospholipid panel on me and found that I had Hughes Syndrome back in 1993. Not sure if they even had that name for it back then. At that time I took a baby aspirin every day while I was pregnant with my daughter and it worked...... My next step had I miscarried with my daughter would have been Heparin. Luckily I never had to try it. Thankfully for that same doctor I have now been diagnosed with Lupus and Sjogrens. My family doctor probably would never have thought to look for it had my OB/GYN back then told me to keep an eye on it down the road and watch for symptoms.

Well for the past three years I have slowly been developing the sypmtoms, and was too bull headed to admit it..... Now I am to the point I am having blurred vision, severe migraines, high blood pressure, joint pain, severe photosensitivity which stinks because we vacation at the beach every summer, and the past 3 years I end up covered in what I have called Hives even though I cover myself in sunblock (showed the Rheumatologist pictures from vacation and he actually laughed about the hives or at me... not sure what he found so amusing) dry mouth, hair loss, severe back and neck pain, anxiety, constant fatigue, weight gain because I am too tired to exercise and depression.


I kept it all in for the past three years because I was raised that strong people are "silent sufferers" Well I have been strong long enough!!! I can't do it anymore, and I refuse to live like this!!! So I went to my family doctor who called me at work, and told me that my blood work was off the charts and it looked as though I had Lupus along with another autoimmune disease called Sjogrens Syndrome (I had never heard of it) and he wanted me to see a Rheumatologist immediatley. Well I went to the Rheumatologist yesterday......... Absolutley could not stand him. He had about as much personality as a door knob!! So.........I made an appointment with a new Rheumatologist who is my age (which is 38)


the guy I saw yesterday was probably mid to late 60's who acted as though he could have cared less about me. So I am keeping my fingers crossed I like the next guy better. The guy yesterday looked at me and said basically, "yes you have Lupus, and yes you have Sjogrens, but I am going to do more lab work, you can call me on the phone next week and I will go over it with you and tell you what meds I am going to put you on". End of appointment!!! It was awful. My husband was furious!!! I go to my new Rhuematolgost December 8th.... Keeping my fingers crossed nothing gets worse until then!! I am so glad I found this website... I have had so many questions answered from readin everything on here! What a god send this has been to me!!! Thanks to all of you!!
 

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Welcome to the forum Josie

I have to say I am glad you have got the diagnosis, even if it hasn't been confirmed by a rheumy yet. Actually most specialists like to do their own testing - there might be some test your GP didn't do that would give important information about treatment needs.

I hope you are more impressed with the next rheumy as it is important to get on well with one's doctor. If at all possible it's best to have a rheumy who has experience of autoimmune connective tissue diseases; the majority don't.

Make sure urine has been tested.


Many of us realise that we suffer silently and hesitate to say how bad things are. It's hard to admit to pain. I hope that it won't be long until you start on treatment that will gradually help you feel much better and hopefully stop the disease in its tracks. It can take some time to find the right mix of medicines.

The sun sensitivity can mean major changes to lifestyle but many people find that they can still get some enjoyment from beach holidays by taking the greatest care.

Bye for now
Clare
 

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Hi Josiegirl,

:welcome: I am very glad you have joined us. Don't be shy about posting any questions you have. The wonderful people on the site are more than happy to help.

Good luck with your new Rheumatologist. I hope he is more informative than the last and willing to answer questions.

Take care,
Lazylegs
 

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Well firstly welcome here. I am glad you have been diagnosed as that can be a struggle in itself. No point suffering in silence. Lupus is not a fun disease and you will need support. We all support each other here. Sometimes even family or good friends don't quite get it!
x Lola
 

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Welcome Josie

Hi Josie;)

So glad that you seem to at last have received a sensible d/x. and have found our site. :blush:Hope your new rheumy can help. So sorry that you had your miscarriages, so hard for you. Thank heavens you have your children now.

I agree re the 60's male rheumy not helping you. That has been my experience, as I fight for a d/x.

For nearly 2 years I have read all posts, and learnt from them, as we have no specialists who know aps/lupus :mad:where I live, and have had to go much further afield. I enjoy talking online:wink2: to my lupie/aps friends, Chats etc.

I look forward to your posts and hearing how life is treating you now. Best of luck:)
 

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josiegirl,
I am sorry that you found a bad doctor, but i am glad you found the site. welcome and good luck with your new doc appt. You can be strong and still interested in finding out things. I am sorry you are having so many problems but for the most part that is par for course with the disease. we are all here for you and remember you are not alone we will talk things out with you if that is what you need. we are not doctors but we each are experts about ourselves. We can only tell you what we know and have been through ourselves.
Best Wishes,
Tammy
 

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Discussion Starter · #7 ·
Thanks to all of you for the kind words and encouragement!! :)
December 8th can't get here soon enough!

I see an Opthamologist this Friday, November 7th for treatment regarding my Sjogren's and difficulty with my vision. Not sure if anyone else has experienced such difficulty with their eyesight? I am extremely sensitive to light and have terrible blurred vision, trouble reading and being able to focus on the words. Just curious if anyone else has ever experienced this. Its starting to really scare me. Thanks for any advice or words of wisdom.... Have a great day!
 

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Hi josiegirl,

The problems you mention with your eyes could be from having very dry eyes due to the Sjogren's. If so then they will prescribe artificial tears and a gel for night time use. They will help a great deal if that's what the problem is.
Good luck and let us know how you get along.

love
Lily
 

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Discussion Starter · #9 ·
Thanks Lily, I hope eye drops will do the trick and make my eyes feel better! :) I am getting so nervous waiting and not knowing!!
 
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