View Full Version : Finally got diagnosed......

June 19th, 2014, 04:03 PM
After 7 years of dealing with various symptoms this is what I found out today.

Well, the Rhuemotologist has confirmed that it is indeed Sjogrens. The one drug that can used that help with my Eyes I cannot take due to my Asthma. He said if I were to take it that I should have the phone in the other hand ready to call 911 because it would affect my Asthma that quick:( There is another drug that can be used but it's for the other symptoms of Sjogrens but will not help my eyes-consequences of that drug is a virus in your brain like Mad Cow Disease.
He has recommended I get a sleep study. He said Sleep Apnea left untreated can cause a Heart Attack or Stroke. I am currently on the highest dose of Prednisone Eye drops and Restasis which has not improved my eyes. But I have to be weaned on the Prednisone Eye drops and cannot stay on these long term because they cause Cateracs and Glaucoma.
I see the Opthamologist again on Monday, so maybe now that we have a definitive diagnosis .......maybe he will have a trick up his sleeve. So I guess now we pray that they Invent another drug that can help my eyes. And this did not change the Fibro diagnosis- he said he believes I have that too! So pray, pray, pray please. I do not want to get Corneal Ulcers due to inflammation in my eyes. So I am trying to not let this bring me down! It's the hand I was dealt, I cannot change it and will continue to push through until they find a remedy or cure :)

Sew Perfect
June 19th, 2014, 04:17 PM
First, I am truly sorry that you are unwell and I pray you will become better. Second, please, whatever you do, don't let this get you down. Those drops are great and work very well for the most part. Unfortunately, they do cause side effects. Sleep Apnea can be very dangerous, but it is a good thing that it can be treated. If you have to get a C-Pap mask, make sure you wear it. It will help you and make you feel like a new person when you wake up! Your quilting friends are here for you.

Sandy Navas
June 19th, 2014, 05:15 PM
Just this morning I was looking at something on my profile and saw your name and was wondering how you were doing. Oh, Fannie, I sure wish your diagnosis was better. Every time I hear a drug advertisement on TV I tell Al that it seems the side effects are far worse than the illness they're treating. I pray they can come up with something that solves all your issues without worsening how you feel. Having vision issues myself you do definitely have all my empathy and understanding.

June 19th, 2014, 05:17 PM
Fannie, at long last you have a diagnosis. Now to get the right treatment for YOU!! Hopefully you will get some answers on Monday. I will say prayers for you in the meantime.

Iris Girl
June 19th, 2014, 05:18 PM
So glad you finally have a diagnosis. That is a step in the right direction. Now to find a medication that will work for you. Wishing you the best for mondays appt.

June 19th, 2014, 05:40 PM
My prayers are with you.

Miss Sheri
June 19th, 2014, 05:42 PM
Hugs and prayers here too. :icon_hug:

June 19th, 2014, 06:06 PM
hoping you can stay calm and focused for Monday thinking of you and sending you a hug x:icon_wave:

June 19th, 2014, 06:35 PM
Prayers for you! You have a great attitude! That's half the battle! Praying for a great visit on Monday!

June 19th, 2014, 06:52 PM
Fannie, My prayers are with you. I'm so sorry you are going through all this. ((HUGS))

June 19th, 2014, 08:06 PM
I sent you an email so for now I will just say I am here to help in any way I can!! There are drugs in the pipeline for the dry eye but they are a while off so in the meantime there has to be another way! Keep me posted!! HUGS. E

June 19th, 2014, 10:28 PM
My prayers are with you also.

If you have to use a CPAP try the nasal pillows instead of the mask, much more comfortable, at least for me, you can try each and see what you like best. Another thing is, they may prescribe you the humidifier that comes along with the CPAP, be aware that it will dry your nose out really bad, I stopped using mine and only use a nasal spray, Simply Saline, no harmful drugs in it at all.

June 19th, 2014, 10:42 PM
Fanny, you have a great attitude! Sometimes having a name for what is going on it helpful - it lets you focus your energies instead of still trying to figure out what is wrong. Hoping they find a good medicine for you. Hugs and prayers, Lisa

June 20th, 2014, 11:04 AM
Fanny, sending good thoughts, prayers and healing hugs your way. It is never easy to deal with a chronic situation....but at least knowing what is going on is half the battle! :icon_hug:

June 20th, 2014, 12:09 PM
Praying for you!! Hugs!!