So, I know a lot of people are wondering what is going on with me, other than the obvious stuff that I post on Facebook, I thought the best way to clear it up was for me to break it all down and share the history. So let me just start at the beginning. Literally, the birth of me. It was a hot summer day in 1980 ....
ok, ok, Im not really going there, but in order to understand it all I do need to sort of start there. I was born with Bilateral Hip Dysplasia. Which really just means I was born with my hips out of their sockets. Hip dysplasia can be difficult to diagnose, especially if it is bilateral (both hips are affected) because the hips are symmetrical. The hips could be a little loose, but otherwise fine, and then get progressively worse as the baby gets older, especially if they slip farther out of the socket when the baby is relaxed, such as while sleeping. With me, that was the case, it was missed. When it was found I had to have my first surgery, a bilateral tendon release, and was put in a super cool cast. I will find a photo and share it, but the one below is similar.
The doctors told my parents I would likely get arthritis in the future. When I was 17 I started to feel the pain, but didn't really realize what was going on. Then in 2006 I learned just how bad it was. I had developed severe osteoarthritis in both hips, and thus hip replacement number one was done on my right hip. Since the hips are not supposed to last that long, and I know future surgeries on the replaced hip will eventually need to be updated, the docs thought it was best to just get the one done and see how long we can wait till the second hip. I had 2 or 3 injections of steroids to help alleviate the pain over the years, but we knew the left one was going to eventually need to go. Which brings us up to date. The arthritis in the right hip is so severe there is no other choice. In 2014 an MRI found a small tumor and I didn't know about it till I got the records to bring to the Alabama Ortho. We will be getting a cleaner CAT scan, but its likely related and benign. Then in 4-6 weeks I will undergo the second total hip replacement surgery. The pain is so bad, it can radiate down into the thigh. I will be happy to finally get it fixed.
my hip scan, one is the bad hip, one is the already replaced, soon I will be doubly part rocket ship, cause it is titanium. It is a blast going through metal detectors.
But what about the tremors and dystonia?
So, this is actually totally unrelated to the hip but just shitty timing! Let me talk about this. In 2004 I was diagnosed with RLS, Restless leg syndrome. I had felt these urges to kick and flinch and move all night, I needed to push on a wall and constantly stretch and shake. It was however only in my legs. So I was treated and life went on.
Till 2012, when I started getting very weak and tired and it felt like all those rls symptoms moved into my body. I was given steroids and that put it at bay for a while. The doctors were suspicious of an autoimmune disease and started testing for things such as Celiac, Lupus etc... No diagnosis was found, and since the steroids began to work and make me feel not so bad it kinda just got forgotten and pushed aside.
In 2013 I started getting blurry vision, weird times of double vision and was sent to see an Ophthamologist, who other than telling me I had cone shaped eyes, he couldn't see anything in the eye that would cause this. My eyesight kept getting worse too, and I have had to up my lenses every SINGLE year. Now that could just be related to age so I move on.
I had a second sleep study done again in 2014 and while on ambien I still had over 17 bouts of "movements" or spasms. The doctor then who was treating the RLS said something about me watching for parkinsons, as sometimes the RLS is first symptom. Well, we don't have a history or anything and I am way too young right, so I just kind of brushed that off and went on.
In 2015 we found that I was deficient in iron and vit d. The iron was so severe that I had to have weekly infusions of venefur. The infusions seemed to help a bit with the movements so I thought it was just that. My iron, that's why I was weak and tired etc..
The RLS did however start to go bad again, this time worse than before and in my entire body! My iron was good, my other vitamins were good and my GP said it was probably an unknown autoimmune. It wasn't bad enough that I wanted to go down that route again with no answers. I didn't want the blanket answer of "oh your a woman so it is Fibro" even though that doesn't match my symptoms at all. Yes, someone actually said that to me.
One day in 2017 a month before we were moving to Alabama, I had what I now know is Dystonia. It freaked me out, I thought I was having a stroke or something, I called my Step dad, to come get me haha. I was in a public place and it was not only painful, but embarrassing. Both of my feet suddenly ON THEIR OWN curled up and turned inward. I could do nothing about it, and it was painful. I couldn't move them back and couldn't walk. It lasted about 45 min and then finally the muscles released and other than being sore a bit, I was fine. We thought maybe dehydration or something who knows? We up and moved to Alabama and let it be.
Well, here is where it gets good. It started happening in my feet and toes randomly again, but this time there was no real connections. Just random. No way I was dehydrated. The kids thought it was funny that moms toes would move on their own, but the bouts of dystonia were short. The longest one was 10 min or so. It would release by the time I got to the doctor so it ended with a hmm, we don't know. Since they couldn't see it and it is hard to explain. During all of this the weird RLS stuff was starting to progressively get worse as well, I would have days of flair ups where it was all day long and in my arms and legs. The feeling of constantly needing to stretch and move and massage and squeeze and pop and shake. But also, weakness too. Lifting my arms felt like I was lifting 100 lbs. You know that feeling you get after a good workout and you feel like jello? That is but without the workout. My brain would feel foggy, I forget things or zone out. I didn't always share this with the world cause it was so hard to explain. It isn't pain but more of annoyance and exhaustion. So now were a year into all this and have had times with no insurance to having it and then not again with Tom's job. So, getting into a specialist was a tad difficult. Around mid September it seemed to be those bad days were turning into more than just a day, but two, three and eventually, it just never went away. I decided to share it because I needed people to understand why I was not coming to events or church etc.. This last two weeks have been the worst, it's a flare up that just wont go away. The tremors, the stretching, the floppy feet and hands and the weird brain fog the bizarre muscle cramps and claws are seemingly getting worse daily. The last 3 days we can add in the fact that I have words I want to say and I can not get them out, it makes it almost like a stutter or a slowdown. My movements are slow and my dexterity is off. We do know from family history that this all is adding up to be a neurology issue. There is something not quite functioning in my brain. It could be the parkinsons that the other doc said, it could be MS, it could be anything at this point. This is where we are.
We got insurance October 1st and so the wait to see the Ortho and now to get this taken care of is all happening at once. The timing of all of it is just kinda crappy. The hip we knew was coming, the pain has been worse for a while, we just needed insurance to see what the timeline was. The Neuro stuff is just crashing together with the hip. I am awaiting the insurance to approve the Neurology visit, that holds things up a bit. So now I just have to deal with it all until I get in and see what happens when they approve and get us booked. Getting the appointment is step 1.
More to come.
