Add an MS Diagnosis to My List

Add an MS Diagnosis to My List

“Can I leave?” is a line from my last column. Not many would say that to a possible multiple sclerosis (MS) diagnosis. But by that point, I wanted to be anywhere else.

I tend to handle diagnoses well. I knew nothing more could be done for me at that hospital. My regular doctors in Calgary, Alberta, would be contacted, and from there it would just be more appointments. 

So, my family and I went on our planned vacation. And I finally got to eat at Olive Garden.

The following week, I had an appointment in Calgary with a specialist. I didn’t have a definitive diagnosis, so I saw my neuromuscular specialist, not an MS specialist.

At that appointment, I was diagnosed with multiple sclerosis. They won’t know what type of MS until I have a second MRI — in which they inject me with dye.

Apparently, I was supposed to have had that in the first place. (It’s always funny when doctors ask why you didn’t have a specific test, when it was a doctor who ordered the procedure to begin with. It’s not like you get a say in these things.)

After the second MRI, I will see an MS specialist and receive a proper diagnosis. I’ll find out whether it’s clinically isolated syndrome or progressive MS.

We all know which one I’m hoping for.

But you can’t get too attached to hope. I tend to stay neutral until I have the facts. From there, I just handle it.

When I went into the hospital, I had to cancel my first book signing. It was a bummer. Ultimately, I rescheduled it for this month, and the bookstore Indigo was very understanding of the situation. (Yes, I will eventually update you on how it went.)

I also had to quit my editing job because I don’t have the energy to keep up with it anymore. I was a little sad about that, but I knew it had to happen. I had been at the job for a year, and it taught me valuable information that allowed me to become a better writer.

Spinal muscular atrophy has taught me to adapt. Although two extreme diagnoses are a lot to handle, you learn to move on. You adapt, find ways to do things you love. And sometimes, you have to give up on things.

***

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

Kala Godin is a 22 year old woman. She lives in Alberta, Canada. She was diagnosed with SMA type 2 at 11 months old. She is a Columnist, Author, and Editor. In her weekly column titled, “The Mermaid Chronic(les)” she discusses her life with SMA. This covers a wide range of topics, from her daily life to the expectation of others. No matter the topic, she tries to keep things silly and sarcastic.
×
Kala Godin is a 22 year old woman. She lives in Alberta, Canada. She was diagnosed with SMA type 2 at 11 months old. She is a Columnist, Author, and Editor. In her weekly column titled, “The Mermaid Chronic(les)” she discusses her life with SMA. This covers a wide range of topics, from her daily life to the expectation of others. No matter the topic, she tries to keep things silly and sarcastic.

2 comments

  1. Mary Butler says:

    Hello my name is Mary Butler and I have just recently subscribed to this website. I am interested in the stories and the advancement in the treatment of SMA because my 12-year old daughter Ryely has just been diagnosed with SMA3. It take a number of years to obtain this diagnosis and several genetic testing. We were happy to finally get a diagnosis on the final testing which was an experimental genetic testing. This happiness was short lived when we found out the cost of the treatment for this condition. Off course my insurance company made me aware, very quickly, of what they are prepared to assist with which is nothing. So here I am in despair, again, knowing that my husband and I will not be able to help my daughter to at least live some semblance of a normal life. It seems that many subscribers have similar problems but I am hopeful that research and studies will create more affordable treatment very soon. The existing treatments, to me, are useless if only two children in the WORLD can afford it.

Leave a Comment

Your email address will not be published. Required fields are marked *

Pin It on Pinterest

Share This