This was a little difficult for me to write, as I don’t like talking about these things. But I didn’t feel it was fair to ask others to share their story for MG Awareness Month and not share my own. So, the following is my own MG story of “how I got here”. Otherwise known as, my long road to diagnosis. What I’m going to try to detail for you here, are the experiences of someone (me), who had early MG symptoms for many years prior to diagnosis.
It’s very hard to decide where to begin, and how much to include. I’ve heard many people say, “How could it take so long to get diagnosed?”
When they hear how common delayed diagnosis is, I’ve even heard individuals who were rapidly diagnosed with MG say that they cannot imagine how it could take so long to get an accurate diagnosis. Therefore, in the spirit of raising awareness, I am offering my experiences up as one example of how these things can happen AND why we need better awareness in the medical community about MG.
I was “officially” diagnosed in early 2011 at 33 years old. My diagnosing neurologist stated that he believed that I’d had MG for a minimum of 14 years prior, possibly much longer. If that’s correct, then I’ve had MG for at least 15 years now.
(There are going to be quite a few medical terms in this post, so I tried to link them to articles that provide more information on what those terms mean, for anyone that might need it.)
Hindsight is 20/20 as they say. Many things in the past can look different, when looking back with the knowledge that you have today. MG is no different. Lots of little things, now look like possible red flags to me.
I was an athletic kid, played sports, did gymnastics, dance, tap dance, ballet, basketball, etc. But more than that, I was always very active. I was the outdoorsy kid that had to be forced back into the house at dark… or often well after dark because I was out catching lighting bugs. :)
I was a fairly strong kid. I could happily work in the garden with my parents for hours, play outside, etc. But I remember some activities being oddly difficult. I remember how much I hated “rope day” in gym class in elementary school because I could only go a little bit and suddenly it would feel like my arms and legs just totally gave out on me. (red flag) I could never climb to the top of that rope. I can still remember the gym teacher laughing at me, or rolling his eyes every time.
I was never very good at running long distances. I would always run out of air. (red flag) I remember the sudden shortness of breath so clearly. I now recognize it as the diaphragm problem that I now have every single day. Back then, it just wasn’t as bad. I could play basketball, because you were stopping at each end of the court, which gives you a bit of a break. But I could not run long distances or race with any success. Much later on in life, when I was diagnosed with asthma they told me that asthma must have been the cause of my shortness of breath as a child. Now, I have some doubts about whether it was early signs of asthma or early signs of MG. It’s hard to say. But I am now very familiar with asthma attacks and MG diaphragm issues, and I can now tell you what I experienced back then, felt exactly like an MG diaphragm issue.
The summer right before 6th grade, I had a sudden and severe onset of appendicitis and had my appendix removed. (This was before they did appendectomies via laparoscopy, so it was an open incision, inpatient surgery with a hospital stay.) For many months afterwards, I had major weakness in my legs. (red flag) I can still remember how hard it was for me to sit in class all day with my legs killing me. My mother repeatedly asked my doctors about this and my symptoms were brushed aside. They just told her to make me rest when I was home. It later resolved itself, but it took many months.
One thing that stands out, looking back, is that when I received any sort of muscle, ligament, or tendon injury, I didn’t seem to heal well. I had many issues with sprained wrists. I broke my arm/wrist and had on-going issues with muscle healing there. (red flag)
Then I had an ankle injury that turned into a serious situation. I could write a book about all the drama surrounding my ankle issues, but I’ll try to keep the ankle story simple for the purposes of this post. I was 12 when I ripped the ligaments out in it. They made me wait, two agonizing years in physical therapy and dealing with terrible pain, because they said the surgery I needed couldn’t be done unless you were mostly done growing taller. (Reconstructed ligaments won’t grow with you.) They almost did the surgery when I was 13, then they cancelled it the day before, because when overlooking my chart they realized I’d grown 2 inches during the previous year. And after finding out how tall my Dad was, they were afraid I wasn’t done getting taller yet.
They were right, I did grow more.
I finally had the surgery when I was 14, during spring break. My orthopedic surgeon completely botched my post-op care (as we were later told by a far better orthopedic specialist from a university hospital). All of my post-surgery therapy was ordered incorrectly, causing major inflammation and fluid in the ankle. I ended up with serious ankle issues until I was almost 17. Thankfully the university orthopedic gave me advice that helped me a long way in calming the chronic inflammation and fluid in my ankle, getting off of crutches, and being able to walk on my own again. But it was a very long road.
Also as a teen, I had all 4 of my wisdom teeth removed (they were trying to come in and there was no room for them, so they were going into my jaw). That surgery caused some permanent issues with weakness and pain in my jaw. I could no longer chew gum, because if I did, my jaw muscles would get extremely weak. (red flag) I discussed this with the surgeon who brushed it off as TMJ like symptoms that can happen after such a surgery.
When I was 19, I was in a bad car accident. My boyfriend was driving my car and I was sitting in the passenger seat when an elderly woman driving a Lincoln Town Car, made an illegal turn and drove into us at an intersection. Thank goodness we were wearing seat belts. My boyfriend’s hands were cut up but he was mostly just sore in his back, and he was doing well after a few weeks of PT. But the lady had driven her car directly into where I was sitting, so my situation was a little different. I received injuries to my spine (mostly neck and lower back) from the impact. After getting knocked to my left, my body rebounded back towards my door, hitting my head and dislocating my right shoulder.
I spent several hours each day, 5 days a week, in physical therapy, for just over 10 months. I had on-going spinal issues, and serious muscle problems. I also had issues with concentration and coordination. I couldn’t throw a beach ball 6 feet to my therapist without hitting her in the head or the knees. My handwriting was so bad it didn’t look like my own. Part of my early PT was practicing writing the alphabet, if that gives you any idea of the shape I was in. Eventually I left PT, because it was obvious they had done everything they could for me there, and they would have kept me there forever.
After no one local seemed to be able to do much for me, I traveled to the same university specialist that had been able to help me with my ankle. He ordered an MRI and told me to wait to hear from him. When the results came back, he told me I had severe disk degeneration in my neck. He told me that he was actually surprised to find something wrong on my MRI.
He said, “I’ll be honest with you. I really thought your spine was going to be fine and that you had a muscle disease.” (red flag) I said, “A muscle disease? Why would you think that?” He said, “Because of your history of not healing properly after muscle injuries and the way that your body is responding after this car accident, it all pointed to a muscle disease. But your neck is actually a mess.”
That was all that was said about the potential muscle disease.
He went on to tell me that the discs in my cervical spine were so damaged that there wasn’t a surgery they could do to help me. He explained that to do surgery, they needed good discs above and below the disks they would remove. And that I had no “good discs” left in my cervical spine. He said technically speaking, every disc in my cervical spine was degenerated enough to qualify for removal. With nothing good to fuse to, there wasn’t much they could do for me, so surgery wasn’t an option. He told me to not do anything that hurt (I found that amusing considering everything hurt – LOL) and he told me he worried for my future. He said that I had a more degenerated neck than most 80-year-old women. He predicted I would be in a wheelchair before I turned 30.
I lost an inch and a half in height within a year following the accident, due solely to disc degeneration.
Upon the urging of my doctor, I tried a pain management clinic (a reputable one). They prescribed me drugs that either didn’t work at all, or provided only the most minor of pain relief and made me sick to my stomach. I tried everything, being hooked up to an electrical stimulation on your spine that you walk around with, injections into my back (which I had an allergic reaction to). You name it, I gave it a try, in an attempt to get better. It’s a good thing God made me tough, and gave me a high pain tolerance.
The specialist that I saw back then, is now the big name pain specialist in our area. I won’t name him here. But he’s the one that is now on all the TV commercials for pioneering new pain management techniques, the guy that’s supposed to be by far the best in the tri-state area. My trigger points were so extreme that nothing really helped them. He said they were some of the worst he’d ever seen. He diagnosed me early-on with Myofacial Pain Syndrome (MPS). The image below is of common MPS trigger point locations. Trigger points are like big hard knots of muscle. You can easily feel them on exam. Some are tiny and some are larger than golf balls. They are painful, and they impact how your body moves and functions. They also have a tendency to “satellite out” and cause additional trigger points.
He later diagnosed me with Fibromyalgia (FM) in addition to MPS. (possible red-flags) My diagnosis of MPS and FM have always held a lot of water with subsequent doctors, because of who it was that diagnosed me. According to them it wasn’t “just anyone” that said I had it, it was “THE” someone, that said I had it.
He couldn’t really do anything for me, so I eventually quit going there too. He was kind, but couldn’t really help me. And I hate going to doctors, so I’m not the type to keep going once they admit that they’ve exhausted all options and just want to keep “checking in” with you.
Thank you for reading, I will post Part Two of my Long Road to Diagnosis, tomorrow.
(Click here to read Part Two.)