The Quest for a Diagnosis

After my husband, Jason, and I got married in 2008, he made some comments about my tremors, balance issues, etc…and started trying to convince me that it wasn’t normal. He mentioned Parkinson’s a couple of times. He’d say things like “Easy there, Parkinson’s” or “Careful, Parkinson’s.” At first I thought he was joking, but one day after he had repeatedly mentioned it, I asked him about it. I’m not sure I’ll ever forget that day – we were in a Mexican restaurant eating chips and salsa, and my shaky hands were, as usual, causing me to drip salsa everywhere. Jason made one of his usual comments and I said something like “That’s not nice and you shouldn’t say that.” I must have been in a bad mood, because normally I would laugh it off. He instantly sobered up instead of telling me he was just playing…and that’s when I thought something was wrong. I remember asking him if he thought I might really have it and he said yes. Even though he had been pushing me for months to go to the doctor, I guess I always thought it was to just have a name for whatever caused the issues…not because he actually thought I could have something seriously wrong with me. I argued with him and said I was too young for Parkinson’s.

I got on the Internet immediately from my iPhone and started looking up Parkinson’s symptoms so that I could prove him wrong. Sadly, I only found more Parkinson’s characteristics that I possessed that I never knew were “symptoms.” I also found out that many PD like symptoms overlapped with multiple sclerosis symptoms…a disease, that while still relatively rare, was much more common in people my age. MS scared me. I remember telling Jason that if I had to have one or the other, I would rather it be Parkinson’s disease.

And so we began a little quest for a diagnosis….and got several! We went to the doctor in May 2009. He did some blood work and I got my first diagnosis…a nodule on my thyroid and hypothyroidism. I began taking Synthroid and saw an endocrinologist. He said I might have a mitral valve prolapse (in my heart) and sent me to another doctor for testing. That doctor confirmed the mitral valve prolapse diagnosis, and also diagnosed me with dysautonomia (I later found out dysautonomia and hypothyroidism are common among PD patients). In the meantime, I also had an ultrasound that determined the nodule on my thyroid was small enough to not be an issue right now. I was referred to a neurologist for the tremor.

The first neurologist I saw was a jerk and made me feel like I was stupid and was an overreacting hypochondriac. He told me I was too young to have anything wrong with me, but said he would send me for a MRI to “prove” that I was fine. The MRI revealed I had an arteriovenous malformation (AVM) in my brain. An AVM is an abnormal connection between an artery and veins. It’s usually present at birth and is typically not diagnosed until symptoms appear. The danger of an AVM is in its rupture, and that’s often when the first symptoms appear. The rupture causes a bleed in the brain that can cause seizures or a stroke and can lead to death.

I was referred to a neurosurgeon to get more information on the AVM. He would let me know if my AVM was in danger of a rupture and if I needed to have surgery to have it removed. At the first appointment, he gave me a thorough examination, much more thorough than the one given to me by the neurologist. It was there that I first heard the term “Parkinson’s” applied to me as he dictated into his recorder for my files “Female age 32 presents with early onset Parkinson’s and an AVM in the right occipital lobe.” Not good.

I had to have another, longer MRI to determine if the AVM was operable (it’s not). The AVM was very scary, but the neurosurgeon felt that it was stable. Increased blood volume during pregnancy can cause an AVM to burst. Since I had already safely made it through 2 pregnancies with no issues from my AVM, he felt we could just monitor it with an annual MRI to check for any changes. The AVM, like the hypothyroidism, could not explain any of my symptoms, so it was back to looking for causes.

We went to see a new neurologist in July of 2009. He was reluctant to diagnose Parkinson’s in someone so young, but stated that all of my symptoms pointed to PD. A symptom I had been unaware of was also pointed out – my right arm doesn’t swing when I walk. My husband had noticed it, but I had not...that’s one of those things that I had never paid attention to. My neurologist sent me for another test but nothing else was found. He wanted to try and treat me for essential tremor first. I tried two medications, but they didn’t work. The next step was to try the medication for Parkinson’s disease.

My Symptoms

When I was in my early 20’s, I developed a tremor in my right hand. The tremor didn’t bother me, because it didn’t interfere with my daily activities. I had once been told when I was a teenager that I had borderline low blood sugar. Since sugary drinks aggravate and make blood sugar issues worse, I assumed that the shakiness in my hand was related to my blood sugar being low. I dismissed it. I’m not a hypochondriac, and I don’t like to go to the doctor, so I rarely would see a doctor unless something was really bothering me.

I also began having incontinence issues in my early 20’s. Since I had not had a baby yet, there was really no reason for me to be having issues like this. Besides, this was not an “I sometimes wet myself when I cough” type of issue. This was an “I’m too young for adults diapers, right?” type of issue. This was a big deal, so I saw an urologist. I had a cat scan and other tests done, and my bladder and the surrounding areas showed no damage or reason that I should be having incontinence issues. I took incontinence medications that provided no relief. I even had my bladder inflated to check for problems and size issues. My bladder is on the small side of normal, but the urologist said it wasn’t small enough to be causing issues. After taking medication for overactive bladder for a couple of years, with no results, I gave up looking for answers and just dealt with it as best I could.

When I was pregnant with my first child at age 24/25, I began falling, mostly when walking up or down stairs. It happened often enough that a friend at work started insisting I take the elevators. I thought it was just a pregnancy balance issue. But the issue continued after the baby was born and on into my second pregnancy. I learned to hold onto handrails and be more careful, especially when carrying the babies up and down the stairs.

I developed achiness in my arms, especially my right arm, which was blamed on carpel tunnel. I was tired a lot, but I had two young children, worked full time, was very active in my church, and was going to school online. Who wouldn’t be tired?

By the time I was 30, the tremor in my hand had become more prominent. Everyone around me noticed it. There were a few comments made by people around me about Parkinson’s disease, but it was always as a joke…and I never seriously considered that something might actually be wrong with me.