View Full Version : Thank you for being here!

04-21-2012, 06:56 AM
Hello all!

I have spent quite a bit of time reading through posts as a guest and would just like to say that I love this supportive community already! It has been a stress relief to come here and realize that I am not alone in my fear and frustration.

Let me start by saying that I have only half-way been diagnosed with Lupus, so I hope I am not over stepping my bounds by posting here. My GP is convinced I have Lupus; I tested positive ANA and Anti-DNA and have various other criteria (discoid rash, extreme fatigue, sunburn look on neck and face, photosensitive rash, vein involvement, and nerve involvement, extremely low vitamin D count, significant arthritic issues) My GP is also an auto-immune mess and I feel very lucky to have picked him strictly from my health insurance web site and serendipity!
Anyway, he sent me to a young Dr who specialized in Internal Medicine (with a fellowship in Rheumatology, although not Board Certified in it). This Dr. took much more blood and tested me for everything including Hep C which came back negative (all except the ANA and Anti-DNA). He never looked at my discoid rash, he had me stand on my toes and walk, looked at my feet and ankles and sent me on my way stating that the blood results could take several weeks.

A little background: My father has Celiac disease with sprews in his intestines. He also has Diabetes and various other health issues. It is also thought that his sister had auto-immune diseases as well, although it is too late to know because she has passed. Personally, I have felt that my issues have been building for about 20 years but could never get a satisfactory answer from anyone. I have had 4 back surgeries, 3 of which included significant stenosis involvement as well.

I went back to my GP because the discoid rash inside my right ear sometimes causes an outer ear infection and he gave me antibiotics and also wanted to see how I respond to steroids. He also read me a letter from the other Dr that stated I do not have rheumatoid arthritis and he does not think I have Lupus. My GP disagrees with this and is going to confer with the other Dr again.

Yesterday, I ended up back at my GPs office highly disappointed. For the first two days, the steroid pack worked wonders! I felt like my old self again, until my blood pressure went to 210/100. YIKES!

This process is so frustrating to me because I am the girl that earned two degrees full-time while running a business full-time and now I can't even clean my bathroom without recovering for two days! I have a low grade fever almost all the time and I feel like I am just watching life go by! I am struggling to peel myself out of bed to get to work and I am still not sure how I accomplish that, except that my motivation to not become homeless and also to have food to eat kicks in.

This should be the happiest time of my life. It feels as though I have finally gotten it together and am starting to recover from education costs; putting a little in savings etc. I have found the man that I want to spend the rest of my life with and who has been wonderfully supportive through this entire process. Yet, I feel so horrible and many weekend days am lucky to get 4 loads of laundry done while spending time on the couch wrapped in a blanket in between loads because I am feverish.

Anyway, I am sorry I just rambled on. I am at my wits end at this point. I have done so much research and I suppose that could be a double-edge sword because at this point my brain is swimming with information, fear, and a feeling of unsettled diagnosis. I have read extensively on both Lupus and MS and can relate to symptoms of both. My last MRI was of my lower spine and no one mentioned MS but I wonder if MS can also cause stenosis. I just do not know where to go from here.

While I feel as though my GP has my best interest at heart; I also feel as though I am clinging to the wall by my fingernails and I am crashing to the floor. He did take me off the progressive part of the steroid pack and told me to try just taking one a day to see how that helped. I am hopeful but I am also feeling desperate for a diagnosis, some answers and most importantly a plan of action!

Thank you for allowing me this opportunity to express what I have been keeping inside for so long! I am so afraid to really speak about this to anyone for fear that I may lost my job or be considered a complainer. While it may not be evident from this post, I am also typically the motivator and I just do not have the energy...


04-21-2012, 07:29 AM
hi rebekah, and thank you for showing yourself.
we have quite a few guests here. it is nice when they decide to become a part of our family.

i am sorry you are going through a rough stage.
i am glad that your gp is so productive for you.
understanding auto immune dosorders is no easy task.
there is 63 of them. (we list them in another post).
and many of the symptoms do overlap.

sometimes it is worth going to an expert.
your new young doctor is still learning.
maybe you need to see someone else.
maybe your problems are not easy to understand.
many of us have had years and years of trying to figure out our problems....
with so called experts.

i wish you luck in your journey.
and thank you for joining us.

04-21-2012, 11:59 AM
Hi Bekah,

Welcome to WHL.
I was going to say the same thing as Steve, try and find a real rheumatologist. Lupus and other autoimmune diseases are very complex and are very tricky to figure out.
I hope that you will find out soon and get started on the right meds, that will make you feel better.


04-21-2012, 09:33 PM
Hi Bekah,
Welcome to WHL. As others have told you, keep looking for a good rheumy and for the answers. It might not be SLE or MS, but it could be one or more of those other AI diseases. Whichever it is, you are welcome here. You have found the right place for people who understand.

04-27-2012, 04:04 AM
hi bekah i agree you need to find yourself a rheumi welcome whl family hugs kim

04-27-2012, 07:25 AM
Hi Bekah. I am really glad you decided to join and become a part of the WHL family! Believe me, we understand the frustration of trying to get a diagnosis. Too many doctors don't understand this disease and it often takes too long to get a diagnosis. Hopefully you will find information here that will help. Look through the "sticky's" at the top of each section. There is so much valuable information in them!

Once again, welcome to WHL. We are really glad to have you