My Diagnosis Story (Part 2)

As a heads up to anyone who is just joining me, this is the second part of the story. The previous post contains the first part and if you’re interested in my story, than I’d suggest starting there.

For those of you who are ready for the second part, welcome back! I am so happy to have you. How about this weather? That’s what people say to start generic small talk right? Just kidding, I wouldn’t possibly bring that up right now since Mother Nature in Southern Ontario can’t figure out what Spring is actually supposed to look like. Snow, hail, freezing rain, tons of regular rain; all within a couple of days. Forgive me while I roll my eyes and wish for some sunshine.

We certainly aren’t here to discuss this horrible Canadian weather though. We are here to talk about the second part of my MS diagnosis story. We had left off talking about how tough that first week was for me. I felt like this diagnosis was a death sentence. My mind automatically went to me in a wheelchair and I was (and still am, for the most part) completely terrified. This did change a little bit when I met my neurologist, however.

I had my appointment with her one week after my MRI and going into my appointment, I was freaking out. I was very fortunate because my parents were able to take the day off and come with me to meet her. I am not sure I would have been able to breathe if I had been walking in there by myself.

I will start this off by saying that I really, really like her. I was so scared that I would have a neurologist that I didn’t like and that I didn’t feel I could trust. I was immediately put at ease by her, or as much as was possible under the circumstances. The timing of my diagnosis was very lucky because she only came to us in the fall. Prior to that, she lived and worked in Colorado. Her sub-specialty is MS and that is the subject in which she did her fellowship. I am so lucky for that because she can see me at her local office. Most people have to go into Toronto to be seen at the MS clinic which is a much bigger deal than seeing her here.

She told me that I have 8 lesions in my brain, but almost all of them are pretty small. I did also have one spot in my T-spine. When I heard that I had 8 lesions, I almost had a panic attack. Being told I had even one lesion would have sounded like a lot, but 8?! Apparently this isn’t very many compared to some MS patients, which is something scary in itself. Just because I only have 8 now, doesn’t mean I won’t have a lot more in the future. On a positive note in terms of the lesions, none of them enhanced when I was given the contrast during my MRI. This means that none of the lesions are active and that is a good thing.

At this point, she told me that she was 95% sure that it was MS. The 5% of uncertainty came from the spot in my spine. She said that it was a different shape and in a slightly different spot than is typically seen in MS patients. She wanted to make sure that this wasn’t a tumour of some sort which meant doing a lumbar puncture. On the bright side, no one actually thought it was a tumour because it didn’t enhance with the contrast. I also had to have some blood work during this visit to rule out any weird diseases that this could also be. I found out at my next appointment that all of that testing (all 11 vials of blood) was normal so that’s a positive.

What did make me feel better is that she said that my case seems like it is pretty mild, that if it were someone in her family, she wouldn’t be overly distressed, and based on how I am presenting, she doesn’t think I will face severe disability in my lifetime. Of course there is no way to know how the disease will progress in any one person, but it was still a bit reassuring to hear a professional describe it in this way.

I went in for my lumbar puncture two days after my first appointment with her, and I was so scared. My mom had said that I shouldn’t be worried because tons of people go through the same thing when they have epidurals. My thoughts were that it might not be as traumatic since you are already about to give birth and that is your pain relief. This was just me strolling into the hospital on a Friday afternoon to be stabbed in the back. Literally. Yes I know I sound ridiculous, but it kind of helps if I can at least make myself laugh about it.

My dad was able to come in with me during the puncture which helped a lot. The freezing was the worst part because it stung more than I expected it to. I did make the mistake of looking over as she took the actual puncture needle out of the packaging. I’m sure my brain makes it out to be worse than it was but it looked huge! Once I was frozen though, everything just felt like pressure. It was better than I anticipated. I had to lay flat on my back for awhile after the puncture just to reduce the chance of headaches. After that, I had to give more blood during this visit to run my MS panel of blood work.

Ever since that point, it has been a waiting game. I did get a call from my doctor’s office to say that the blood work results were not back yet but the results from my puncture were in and there were no cancerous cells present (woohoo!!). This is one of the few times I will be thankful it’s MS, because that means I don’t have a tumour in my spinal cord. It’s the little victories, right?!

I do go back to see my doctor in a few days so that I can get my results and likely discuss my options for medication. I had read that medicating MS early is better for your prognosis but I had also read that some doctor’s didn’t agree with medicating early. I was afraid that she would be one of those doctor’s but when I met her, she gave me a great analogy. What she said was, “if you find cancer, you don’t wait until the cancer gets worse to treat it.” I thought that was a wonderful way of looking at it.

There have been lots of thoughts and emotions during the last month. I don’t want to address it all in this entry because I do feel there are so many topics that deserve a post all on their own. That being said, I will try and concoct these posts fairly regularly so there isn’t too much radio silence here.

If you have made it this far, thanks so much for reading, and keep smiling everyone!

Amanda

“Never lose hope. Storms make people stronger and never last forever.”

– Roy T. Bennett

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