Mission Mayo Update
First off... if you aren't already following me on Instagram, feel free to check out my Mayo fun via photos there under @the_mama_blog. With all of the info I have for this post, I won't add the pics, so feel free to check them out there.
After my last post, I know some people are looking for an update, so here goes...
Last Sunday I headed back down to Rochester for what ended up being a week of marathon appointments. Here's how it's all gone down after my initial appointment with my Internal Medicine physician, Dr. Saddiq:
- Lab work
- X-rays (hands, elbows, collarbone, hips, knees, feet)
- Rheumatology consult
- Orthopedic consult
- MRI of my abdomen to rule out liver or kidney issues
- Ultrasound of my hands to check out arthritis damage
- Special scan of my capillaries (nail beds) to check for signs of early stages autoimmune issues
- Dermatology consult
- Skin/bump biopsy
- Pulmonary consult
- Neurology testing
- Fibromyalgia / Chronic Fatigue Syndrome Consult
- GYN Consult
- Follow-up with Internal Med
- Pharmacy Consult
- Fibromyalgia / Chronic Pain Management Class
Okay, now, WHY did I see all of the different specialists and have all of the different tests and procedures? What's the final verdict? GOOD QUESTION!!! We still don't have all of the answers, so I'll do my best to sum it all up.
As usual, most of my lab work came back normal. No major "hey look at me, I'm the problem" results. X-rays were pretty boring as well. The commonality among them was that I have arthritis in my joints, but it's minor and it's osteoarthritis, which means typical, degeneration of joints. No major cause for alarm.
Rheumatology decided that I don't have any autoimmune disorders at this time. I present with all of the symptoms of an autoimmune disorder, but without the supporting blood work, they can't say it's autoimmune for sure. The ultrasound of my hands and the capillary scan both concluded that all is well right now.
He sent me to dermatology to have the bumps on my elbows looked at. A 20 minute consult turned into a 90 minute appointment, complete with bump biopsy and four stitches! We're still waiting on the results of that biopsy.
Pulmonary and neurology tests came back great. No major concerns there, which is good news. My heart is awesome and my body is doing what it needs to do when it comes to daily operations.
Then there was a little scare... Okay, I was actually freaking out for about 36 hours. The CT scan showed a Teratoma, or tumor, in my right ovary. There are only 20,000 cases of teratomas in the U.S. and of course, I would be one of those! Good news, although it is a tumor, mine is a benign tumor and still small enough that he doesn't feel the need to remove it. So, for now I will just have a creepy squatter in my ovary. Go ahead, look up "mature teratoma" and you'll see what I mean by creepy!
The follow up with my Internal Med doc was the most enlightening. She has been super thorough and our visits have been highly entertaining! All of the super bad stuff came back fine, so now we focus on the not so horrible stuff. I have officially been diagnosed with Fibromyalgia. While it has a HORRIBLE stigma surrounding it, the gist of my story is that my central nervous system is on overload and reacting as such. It's extremely hypersensitive and misfiring, resulting in full body pain, utter exhaustion, and many other fun little tagalongs.
She doesn't think my collarbone is associated with my Fibro either. The x-ray of my collarbone stated that I have widening of the AC joint, which may explain the pain. I'll know more for sure after my appointment tomorrow with that specialist.
My Reynauds Syndrome is not part of the Fibro issue, so that's on it's own. She also thinks I have a form of GERD. I don't get heartburn so she said it's more NERD. HA HA!! That just means that it still causes inflammation, but it doesn't travel above the valve at the top of my stomach. I still have a chance of having Celiac Disease. She wants me to try some things and if they don't solve some of the gut issues, I'll go back to have a scope done.
In her words, my body is on the edge. My body may decide that it has autoimmune issues, but for now it's keeping it all at bay as far as labs go. She's hoping that the pain management skills I learn in my chronic pain class will help me downgrade my daily pain to a manageable level without medication. Then we just keep an eye on things. She said my labs may catch up with the rest of my body in the next year, five years, 10 years, or never. It's really a wait and see game. For now we know I have a central nervous system processing disorder, so we will focus on that.
I will have two injections - one in my hip and one in my side - to try to get my main pain locations under control. I'll explain more about the pain management plans, but the best news is that my joints all look good right now and the doc said she wouldn't put any restrictions on my activity at this point. I won't do damage and she wants me to be as active as my body allows. YAY!!!
It's been a crazy, busy couple of weeks, I'm sure I've missed some of the things we did or tested, but I got the gist of it and we still don't have all of the answers to everything in question. At least we have some answers and some plans for moving forward. The rest, we just have to wait and see what works and what doesn't before we decide the next plan of attack.
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