ALS with Anna Vol. 5

Four scores and seven years ago… Okay maybe not that long ago. It seems like a lifetime ago and honestly it was a different life time, a life Before ALS. I’m going to address the big question: When and how did my ALS start. The one thing I can’t answer is why. We still don’t have that answer, though I have my thoughts. For a later time. 

Looking back now I noticed my first symptoms starting the summer of 21. I was about 4 months pregnant. Now mind you when I got pregnant I was in the best shape of my life. I had lost 45 lbs and was walking 2-3 miles a couple of times a week. I was a very active person. I rode horses and went kayaking for hours during the day. However, my pregnancy either hid my symptoms, they were overlooked, or the symptoms were thought to be a part of the pregnancy. Until after my pregnancy.

Summer 21

The first symptom I noticed was that my thighs were getting weak. I noticed it took more effort to get off the toilet. It was like they were closer to the ground all of a sudden. I blame it on pregnancy. I was almost 33 & this was my 3rd pregnancy. My thoughts were this pregnancy must be a lot different. I was sick the whole first trimester. I had to take Zofran for nausea, which I didn’t have with my other two pregnancies.

Augusta 21 

I got Covid. My symptoms were very mild, just felt like the flu. I honestly don’t think Covid had to do with my ALS.

September 21

6 months pregnant. I couldn’t hardly get off the floor when I would squat down. I had started sitting on a medicine ball to avoid sitting on the floor to fold clothes and clean up the kids room. Again I thought it was the pregnancy. 

November 21

8 months pregnant In the afternoons I would get restless legs. Then at night when I would stretch my legs would lock out, shake uncomfortable, and then cramp. I was also extremely tired. I talked to my doctor and was told it was a pregnancy symptom. 

December 29th 2021 

Dane was born. I noticed my legs had gotten a little better. I wasn’t as tired but I was home on maternity leave also.

February 2022

I go back to work, I believe it was the 18th. My first day back was when I realized that I am walking differently. I remember it like it was yesterday. I walked out of my classroom, started walking fast to the workroom, as a teacher you tend to walk fast every where you go. As soon as I got out of my classroom I could tell my walk/gait was off. It was like my right leg wasn’t working right. It was slower and I couldn’t speed walk. I also noticed I didn’t have that natural sway to my hips. My husband says I always had a natural sway to my walk, I couldn’t help it. Now why did I notice all this on this day of all days? I had been home on maternity leave. This was literally my first time out without a stroller or a baby on my hip.  I brought it up to my friends and husband but didn’t think much of it. 

Later that week, I started walking with friends after work. My first walk I had to cut it short because less than a half mile in my legs were shaking and felt like jelly. I didn’t tell my friend, Miranda, but I was worried I wasn’t going to make it back to the school parking lot. I cut the walk 

Short, just thought I was out of shape, and the pregnancy had destroyed my body. By the time I got back to my car my thighs were jumping uncontrollably. I gave it a day or two and went walking again and over time my legs got stronger. I still couldn’t power walk.

March 2022

My best friend, Lauren and I took a group of girls from school on a field trip to a trampoline park. This is the first pivotal point in my timeline. This when I knew something wasn’t right and I couldn’t ignore it anymore. When we first got there I tried to do the obstacle course and I noticed I was weak in my arms. I fell off at the back of the foam pit and almost had a panic attack because I thought I was not going to be able to get out. It took me like 15 minutes to get out. Once I got out I was exhausted. Later when I was jumping on the trampoline I felt weird like I couldn’t trust my arms to hold me up to do a flip. At the end of the trip my thighs/muscles were jumping. I started to become worried at this point. I remember telling Lauren multiple times something isn’t right, and I remember thinking she is going to think I’m whining.

When we got back to school I showed another coworker what my muscles were doing and she thought it was from over exertion of my muscles. It didn’t make sense because I was very active before. This was when I knew I had to go see my PCP. I also had my first experience with over stimulation at a pep rally that same day. I had to leave in the middle of the rally because I felt like I was going to have an anxiety attack. I remember when I was walking out I was worried my legs were going to give out. That was the end of March, right before our spring break.

April 21 

I go see my PCP the 1st week in April. I tell her all my symptoms and she thinks maybe MS, but we run all kinds of blood tests first. I freak out, but a few days later my test comes back positive for Rocky Mountain Spotted Tick Fever. We are all relieved, a round of antibiotics and I shouldn’t have any permanent damage. I continue to get worse once on antibiotics. So we do an MRI of my brain to check lesions, it comes back clean and clear. So my doctor sent me to a neurological doctor. I want to go to the best in Savannah, but they take forever to get in touch with me. Meanwhile my left hand starts to “slow down”. I can’t open and close it fast, it moves in slow motion. So I decided to go see a local neurologist.

May 21

I got an appointment the 2nd week in May. Once he sees all my symptoms he sends me straight to the hospital. He admits me and runs a head to tail bone MRI. That was a lot of fun, almost 2 hours in a closed MRI. 10 out of 10 don’t recommend it. Everything comes back clean and clear. He thought I had a tumor. What I wouldn’t give for it to have been a tumor. I stayed in the hospital for 3 days. They run every test known to man no one can figure it out. Funny thing is while I was in the hospital the neurologist I wanted to see called to schedule me. I did schedule an appointment with them for July 18th. I did find out while at the hospital I didn’t have Rocky Mountain Spotted Tick Fever. The first test was a false positive. So now I feel like I have been on a wide goose chase. I have figured out nothing. Once I get out of the hospital I have a follow up with my neurologist. When we go to see him is where things get weird, but it worked out in the long run. So the neurologist tells us he is going to have to send me to a specialist. He wants to send me to UF Health in Florida. I quote “That’s where he went to school and I know Dr. Pulley personally. I have his number in my phone. He specializes in Lou Gehrig’s Disease, but you don’t have that.” To which Jason and I go then why send us to him? We want to go to Mayo. Then he starts trying to talk us out of Mayo. He tells us that it would take us 6 months to get in and all this other stuff. We told him we wanted to try Mayo 1st. He finally agrees when we say “ If we can’t get in soon then we will go to your doctor.” We leave with the referral paperwork. It says the office is in Jacksonville, no name of office or doctor, just fax and phone number. We call and get a secretary, not the office number. We are treated wonderfully. Given personal office numbers so we can get directly in touch. We get an appointment for a month away, June 24th.

 

By the end of May I was walking differently and it was noticeable. At graduation the teachers walk out on the field. I couldn’t keep up with the person in front of me. When I would get nervous or upset it got worse. My aunt, whom I was very close with passed away. I had a difficult time standing and walking at her funeral. I remember falling behind when walking out behind the casket. I had also had my first fall around this time. 

June 21

So it’s almost time for my appointment at “Mayo”. I booked our hotel. It isn’t until a week before the appointment, on June 24th, that we realize the appointment is with UF health, not Mayo like we told my doctor we wanted. I’m pissed! He has sent me his friend, where he wanted me to go, not where I specifically told him I wanted to go. BUT we are this close to the appointment and I want answers. We try to have an open mind going into the appointment. 

When we are on the way to the appointment we are not impressed it is in a sketchy part of downtown “ish” Jacksonville. We become even less impressed when we get to the office building. It is a 7 floor building, it’s old, very dark, and not very aesthetically pleasing. It screamed 70’s. Don’t get me wrong it’s my favorite decade, just not what I want in my doctors office. Good vibes were not given.

Once we get to the office the women at the front desk are about as welcoming as the Goblins in Harry Potter. While I was filling out paperwork I noticed for the first time writing was a little different/difficult. We get called back. The nurse is extremely nice. She stays in the room with us the whole time, we talk about our families. We feel very welcome at this point. Dr. Pulley comes in. He does all kinds of physical tests on my arms and legs to gauge the response of my muscles. After each “test” he tells the nurse numbers  like (5, 3, 1) and he reacts while he does it, oww and ahh. Meanwhile Jason and I have no idea what is going on. After doing my own research I have taught myself that the doctor was testing for spasticity and clonus in my muscles which is a common symptoms/sign of ALS. Then he wants to do an EMG on me. I don’t remember exactly what he said. It was something along the lines of a needle, electric shock, reading muscles reactions to stimulation. It was like being stuck with a tiny needle that was hooked up to an electric fence. Lucky for me the fence was kinda weak or I’m just used to being shocked by the horse fence as a youngin.

During all this fun Jason has to walk out. He couldn’t take all the fun I was having. When Dr. Pulley gets done he wants to wait and find Jason before he gives me the results. He sends the nurse to find Jason. Meanwhile I’m thinking wow that is nice of him to wait and to include Jason so I don’t have to repeat what he says. Jason comes back in and this is where our lives change forever. I don’t remember much of what he said. I know he talked a lot and he was probably explaining something about the the test and what it told him. Then he says the words “ You have ALS”. I felt all the blood drain out of my face and the rest of my body, I heard my heartbeat in my ears, time stopped, I looked at Jason, and he broke down. I had, what I can only explanation as, an out of body experience. I thought this can’t be right. I’m in a nightmare this isn’t real. Then I thought well I really don’t know what ALS is, maybe it’s not that bad. Then he told me what it was. (if you want to know what that was like read my 1st blog)

After his explanation I was lost. I just couldn’t believe it. I was floored. I never cried though. I was in shock. I was very clinical about everything else from that point on. I wanted all the information and they kept telling me I could go over everything and do the other test next time, to let everything set in. I was adamant that I wanted to do whatever I could do that day, no need in putting it off. So I did the breathing test to measure lung function and I did the DNA testing to find out if I have the ALS genes. I don’t by the way. Then we walked out of that office numb and lost. 

Well I don’t know about you but that was a lot to take in and a lot for me to unpack. I feel a part two coming, I’m done for now. As always I appreciate your support.

~He has a plan and I have a purpose~

• ALS with Anna

Graduation May 2022 with my teacher bestie