Getting Closer to a Diagnosis

I had my first appointment with the movement disorder specialist on March 12th. The office itself was so inviting, filled with comfortable couches and warm colors. It did not have that typical sterile doctor office feel to it, though it was very clean. Coupled with a friendly staff, it certainly took some anxiety out of that first visit. While in the first room where the nurse takes the vitals, I started to have an attack. By the time we (my husband and mom were with me) made it to the the doctor’s office down the hall, I was going in to a full attack. I was thankful for this, as the doctor was able to see firsthand what these are like. Let me tell you, this doctor is the best one we have seen in all our years of searching for answers.

He was kind and very patient. He made careful observations and asked plenty of questions. My husband and mom did their best to answer when I couldn’t get the words out. Once my body decided to settle down a bit, the doctor started talking about his plan of action. He said that he felt it was possible that I may have Dystonia and Psychogenic Movement Disorder. He mentioned the possibility of something called dystonic storms. He asked the nurse to check with insurance about any pre-authorization for tests.

By the time we checked out at the front desk, we were scheduling all of my tests.

To our surprise, we didn’t have to wait weeks to complete them. The first one I did was the neuropsychological evaluation. It consisted of a short interview with a very nice neuropsychologist who specializes in movement disorders, and roughly two hours of tests that evaluated memory, cognitive thinking, and mood. At the end of that visit, the doctor was able to tell me that my cognitive thinking and memory appeared to be in good shape. This scarecrow does have a good brain. She said that she could see that my health issues were of big conern and that yes there is some depression and anxiety present. I must admit, that appointment was mentally draining.

It took two more trips to the office to complete the other tests. I’ll be honest, some of them were uncomfortable and even painful. It didn’t help that I was having attacks during some of them, I’m sure. I have one test left to complete, the ambulatory EEG. I will be getting this hooked up on Tuesday and will wear it for three days while going about daily life. My follow-up with the doctor is set for April 13th. With any luck, the results will come back quickly and maybe they will be able to squeeze me in sooner. I finally feel like we are going to get answers. I am so very thankful for this doctor, my amazing family and friends, and all the love, support, and prayers. Thank you, God!

Here is a link that I found informative: https://dystonia-foundation.org/what-is-dystonia/faq/


Take care friends, and as always, thank you for being here with me on this journey.

With love,

J♡

Time for a Medical Update

Hello, friends! Back in October, I shared with you that I had been having seizures. I did finally make it in to see the neurologist in November. He ordered a brain mri, which thankfully came back negative. He also ordered an EEG. It also came back negative. The doctor’s conclusion? Movement Disorder. He could not say what type of movement disorder; for this I would need to see a movement disorder specialist. Ugh, more referrals, more phone calls, more denials, more stress. Thankfully my momma bear came to the rescue again. Last week she found a doctor, and my appointment is set for the 12th of this month. I have a good feeling about this one; I really think we’ll be able to get some answers. We are all anxious as it has been a trying several months. For a little while the episodes seemed to let up, and I even started driving again. Unfortunately, they are back full-force and I have quit driving once more. There were four times while driving that I had these episodes. Thankfully, I was able to pull over before they went full blown. It’s too scary and they escalate so quickly. I can’t take the risk of putting my family or anyone else in danger.

I was hesitant to add this video, but I wanted to give you all an idea of what I am talking about when I mention these episodes (attacks, as we call them). My muscles tighten up and have a difficult time releasing. The positions that I end up in at times are so painful. The more severe episodes leave me completely wiped out and in need of a long nap. This video shows a mild episode that I had last night. Please excuse the goofy attire and crazy hair -it was a lazy Sunday.

I pray you all have a wonderful week. Thank you all for your patience, kindness and support.

With love,

J♡

Hello 2020

December went by far too fast, as it does every year. I hope that you all had a safe and fun New Year’s Eve. I am thankful for the memories made, the lessons learned, the blessings and the struggles that 2019 brought. I pray that this new year brings you all love and happiness!

Now that the holidays are over and things are slowing down a bit, my goal is to get back to blogging regularly. I’m trying my best to get through a depressive episode, so it may take me some time to get back into it. Thank you for being patient with me and sticking around. Lots of hugs to you all.

With love,

J♡

Medical Issues

Hello, everyone. How are you?? Can you believe it’s October already? I think it’s been close to a month since my last post. I will try to fill you in on what’s been going on without making this too lengthy.

First, the good news; my spinal cord stimulator is working great to alleviate the low back and leg pain (most of the time). I have to admit that the second to third week of recovery was really tough. My body went into a huge fibro flare to the point where I actually feared myself for a moment. There were a couple of nights where I couldn’t sleep and hurt so bad, that I thought I might go temporarily insane and try to claw the device out of my body. I know that sounds gross, but in those moments, I wanted to crawl out of my own skin. My back hurt and I could feel the wires just under my skin…it made my stomach feel sick. All that is better now, thankfully. Just when things start to be looking up though, life likes to throw a surprise party.

Do you remember the “psychogenic movement attacks” that I’ve mentioned before, and how I had one of these at my post-op appointment? It turns out, they are actually seizures and I’ve been having them every day, multiple times a day. The first time it was given this label was at a doctor’s appointment to check thyroid levels and such. I had an episode during my appointment and thankfully, the doctor was able to identify what it was. Not being his particular field though, he could not say what type it was or why it was happening. He was going to reach out to a colleague for help.

The next day, we were running late to pick our son up from school. I had a seizure just as we were trying to leave the house. We make it not quite a mile from the house when the police lights and sirens are in our rear view. My husband was pulled over for a broken taillight. As the officers were running our information from their car, I went into another seizure. My husband jumped out of the car to notify them and Fire/Medical was called. I do not lose consciousness during these, but become less aware of what’s happening outside my little bubble. The officers notified our son’s school while I was being checked out. I declined being taken by ambulance to the Emergency Room, and would have my husband take me there right after we got our son. The ER placed an IV, started fluids, and drew blood. I was given an anti-seizure medicine and sent for a CT scan of my head. Right after the scan I had another episode. This time they gave me a more powerful medicine. My CT came back normal, so they sent me home loopy and half asleep, and told me to follow up with a neurologist.

The next morning, I had a follow-up at the surgeon’s office. Guess what? Another seizure. Another Fire/Medical call. I declined going to the hospital at all this time. I wasn’t going to have them inject another knock me on my butt medication and send me home. A waste of time in my opinion. I finished my appointment and left with another neurologist referral.

A couple days later, I got in to see the physician assistant at the pain clinic. I had a seizure while there too. She wanted to call 911 but I begged her not to. Out of respect for our wishes and because she’s seen me for four years, she agreed but was not comfortable with it. At this point, I was having four to eight episodes a day. She prescribed me a strong muscle relaxer and sent in a referral to the neurologist.

The next week was filled with searches to find a neurologist that accepted new patients and our insurances. The seizures were leaving me so tired and I had what I thought was a cold, so I was spending a lot of time in bed. My hubby told me I should try to get up more so I didn’t catch pneumonia. Well…

I went from low fevers, to shivering cold, not sweating and spiking a fever of 105 before finally going to the hospital. This time was a longer visit. I was admitted that Thursday night an stayed until Saturday evening, to treat sepsis and pneumonia.

Selfie because hospital gowns are glamorous

And of course Mr. Cuddles was there with all his shenanigans…

He has a coffee addiction
“Not that button!”

I’m feeling much better from that now, just still lacking energy.

I had a follow-up with my family doctor for the hospital visit and also to get another referral to a neurologist (as required by insurance). You guessed it, another episode. This time, he was able to say that he thinks these are temporal lobe seizures. But of course, the neurologist will have to make an official diagnosis. We actually left that appointment feeling relieved. We finally felt like we knew what we were dealing with.

As long as I take my muscle relaxer every eight hours, the seizures are less frequent and less intense most days. After a lot of hoops we had to jump through and some drama, I finally have an appointment scheduled with a neurologist for the 23rd of this month (thanks to my momma bear). In the meantime, I can’t drive and kind of need a babysitter. I also found this information the other day; and I’m not too thrilled about it, but I understand.

I will try to keep you posted as much as I can. Take care, my friends and God bless you.

With love,

J♡

Fighting, With Help

I try my hardest to smile for you

You know me so well, that you see right through

Beyond the laughter and words I speak

You uncover the secrets I try to keep

I was afraid my demons, would scare you away

You reassured me that, you are here to stay

You told me that, you’ll love me forever

And through all the storms, we’d walk together

I know with your help, I’ll be alright

So one more day, I’ll continue to fight


Thanks for reading. You are not alone…keep fighting. Sending a big hug to whoever needs one. 💌

With love,

J♡

Attention: Prayer Warriors

My dear friends, I know it has been a while since my last post. I have been struggling, and I plan to talk about it in a later post, but tonight I have a favor to ask. If you find it in your heart and have a moment to spare, would you please say a little prayer for me?

Thank you. God bless you and your loved ones.

With love,

J♡