"Always the Statistic", raising awareness one post at a time.I keep "dancing" the best way I can.: Rheumatologist appointment pointless, but I won't stop fighting!

WARRIOR IN EVERY SENSE OF THE WORD!

I am a WARRIOR that refuses to give up!

It's NOT just a headache!

So, I had posted a few days ago that my Rheumatologist appointment had been moved up to July 21 instead of August 5. They changed the appointment late Friday and my new appointment was first thing Monday morning, so the appointment was pointless and a 2 1/2 hour waste of time. The Infectious Disease Doctor still had all of my previous scans because he was reviewing them all from 2010 to present, to see if anything jumped out. The Rheumatologist didn't have my records, so he basically had no idea why I was referred to him in the first place. He's like "am I supposed to figure out the fever"? No. Told him about my appointments with the Neuro-Opthamologist and MS specialist in January, 2014 and how they they I had Sjogren's Syndrome. The Neuro-opthamologist noticed that my eyes were very dry, my mouth was dry, and my lips were dry and cracked. She did a Schermer's Test which came back positive (Schermer's tests to see if you made adequate tears or not. They put filter paper in your eyes for 5 minutes, during which time your eyes remain closed. The test is positive if the paper is still dry or barely wet). Since that test was positive, I had to go have blood work drawn, to test for Sjogren's Syndrome. The blood work came back positive.

I had an appointment with an MS specialist towards the end of January 2014. I had an appointment with a new neurologist before seeing the MS specialist. We debated keeping both appointments, but my PCP, husband and I decided it would be in my best interest to keep appointment with both of them.

I would have a neurologist to see, since we were unsatisfied with my previous neurologist. This neurologist was replacing Dr. Riggins, whom I fought like hell to get into, but we received shocking news that she was no longer there when I went for nerve conduction studies. They recommended Dr. Skuster, and I said no thank you, we were very unsatisfied with her. So, they scheduled me with Dr. Hoesch. I was very impressed with Dr. Hoesch and I am so happy that I kept my appointment with him. He said he didn't think I had MS and couldn't understand why the Urologist told me I had MS. He said that is a pretty scary diagnosis to throw at somebody without any definitive cause other than the inability to void by myself. Because I have to straight cath on a pretty consistent basis,the urologist (whom I was not impressed with, especially since he was chomping his gum during the exam and throughout the cystoscope procedure), (and for those that don't know me very well, I HATE GUM!! I hate the chomping, the popping, the annoying noises, and never mind the sticky, obnoxious mess that it makes). He said I had atypical MS.

When I met with Dr. Hoesch, he asked "what the heck is atypical MS?" I said I had no clue. Dr.Hoesch impressed me, and I can be pretty critical of doctors. He impressed me, because he not only listened to me. He validated me. I told him I didn't want another drug to try as preventative as I had tried several and I hated the negative side-effects. I also told him that I also know all about medication over-use headache and I did not medicate for every migraine, because I didn't want to get into the vicious cycle of fighting rebound headaches. He encouraged me to see the MS specialist so we would know for sure.

I went to the MS specialist, Dr. John Foley and he couldn't rule out MS. He said I was displaying signs of MS and Sjogren's syndrome. He wanted me to see a Rheumatologist right away so that we could rule out if I had Sjogren's or MS. He told me to come back after my appointment with the rheumatologist. Apparently, Rheumatologists are hard to come by in Utah. There are very few and have a long waiting list. I had one office deny me because they didn't think my case was crucial enough. So, it only took me 7 months to get into a Rheumy.

When I went to the appointment with the Rheumy on Monday, I felt like I was hit with a brick wall. After our appointment, I seriously just wanted to curl up in a ball and cry my eyes out. I felt so defeated. I get the feeling that I am not valued and these specialists could care less that I have lost so much of my life battling all these issues. He told me that he hoped I didn't have Primary Sjogren's because it is more aggressive than any form of cancer. Inside, I am falling apart, but trying to maintain my composure on the outside. When he did his exam I was fighting the tears and was trying to climb off the table, because it hurt so bad when he was touching me.

He ordered a bunch of labs. I have no clue what labs were even drawn, because I didn't get to see the paper. He blew me off when I told him that in the past 6 weeks or so, I had been in so much pain. I told him that I literally am in tears on some days because it hurt so bad to even walk. I told him the back pain was getting worse. My pain is not alleviated when I lay down in bed. I felt defeated. He didn't even want to schedule a follow-up visit. What the hell? Am I supposed to live in pain and suffer?

He said maybe my meds were contributing to the dryness. I told him I had been weaned off of all of the medications that can cause dryness. He said he could give me another drug to help with the dryness, and I declined. I told him I was doing just fine with water, eye drops, and rinsing with Biotene. Sometimes I don't get the medical world. They blame the drugs for causing the problems, and they want to give you another drug to combat symptoms of another drug. No thank you. I don't want all these damn meds. I want to get to the root of the problem, not mask it with another drug.

So as of this moment, I have no f-ing clue where to go from here. I just know that I am tired of being in pain. I maintain my brave face so my husband and girls don't worry. I do my best to be happy and make ever lasting memories with my family. I don't want to have a pity party. I don't want to complain. I want to laugh and smile. I love nothing more than to bring a smile to somebody's face. Smiles are so beautiful. Smiles can change a bad day into a good day. Smiles are contagious. Smiles are free. Why not hope for the best and smile? I refuse to let this get me down.

Next week, after the holiday, I will touch base with my PCP and see what he suggests. I refuse to give up. I will fight, be boisterous, annoy the hell out of the doctors until I get them to take me seriously. My PCP and neurologist are amazing, it is all the other specialties that could care less about me.

I feel defeated, but I have not lost. I just need to fight harder, and introduce "Pregant Amber" (no I am not prego,if you are curious, ask and I will explain. :)