View Full Version : Update!!

09-19-2010, 02:28 AM
Tomorrow I will be seeing a resident and attending physician at the University of Washington Neurological Clinic. I am really hoping they can get to the bottom of my symptoms. I also am back to being in a bad flare. Stuck in bed most of the time. I am so tired all the time, even when I wake up. Joints are swollen and red. malar rash is more like lesions on my face. It opened up and bled and then started weeping. I did have about 3 wks of almost normality in August. Now back to living hell. I wil keep everyone posted as to what goes on and and results of any tests. Take care all! Sorry I haven't been on whl in a while. I will try to be on more often. I was given a laptop from my aunt, so I can stay in bed and still be online. (((((HUGZ 2 ALL Lupies)))))

09-19-2010, 11:14 AM
I'm sorry to hear that you are back in a bad flare again :-( I, too, hope that your app't @ the Neurology Clinic at Univ of Washington gives you some answers, or at least an idea about what is suspected, what steps are going to be taken, and how they intend to help you.
Please, do keep us posted!

Peace and Blessings

09-20-2010, 08:04 PM
Good luck at your appt. I hope you get the answers you are seeking and some treatment that offers relief.

09-20-2010, 08:57 PM
I hate to hear that you are in a flare but it might be for the best as the doctor will be able to "see" what you are feeling! I hope they give you some help and make you feel better. That's great that you have a laptop. They sure are nice when you are flaring and need someone to understand. You can rest and still reach round the world. FEEL BETTER soon! Billie

09-25-2010, 12:51 AM
Thank you all for your support and for responding! Yeah it sucks to be back in a flare!!! I did get 3 wks flare free this year so far... LOL!!! Well I am am back from Seattle. They did EMG and EEG tests on me. Won't know results for a few more days. The Dr at the University of Washington wants me to stop all NSAID's and my migraine stopping meds except for the opioids. I don't really understand this as most Dr.s want you to not take the pain meds. Anyway he wants to see if its the meds causing the neuro symptoms or the migraines themselves. Or just there on their own. Also wants to be able to narrow my other neurological symptoms down to one area of the brain. So I go back in 3 mo and see what if any the difference is. He upped my gabapentin and raised my prednisone also to taper from 60mg back to 10mg. I am so DARN FRUSTRATED!!!! UGH! I guess I was hoping for a quick fix, who could blame me. daily migraines for 13 mo now SUCK THE BIG ONE!!!!

09-25-2010, 08:24 AM
A quick fix? LOL We all hope for that and few of us get it. I do hope they find out what is wrong with you soon! No one deserves to have to live like that. Just remember, we are here for you if you need to vent!

09-26-2010, 06:45 PM
Love your heart... Hope you will find out what's causing those headaches and get some relief soon. Just hang in there. It doesn't make sense but the headaches my stop and you will be able to get some real help.

09-27-2010, 01:22 AM
Thanks Tgal and hillbillie, I may need to vent alot very soon! hugs to all

Angel Oliver
09-28-2010, 11:47 AM
Thinking of you and hoping you feel a little better soon and get many more answers n help.
lots of lovexxxxxxxxxx

09-28-2010, 05:23 PM
Thinking nothing but good thoughts for you

here's a hug