Celebrated my 2 years MS-iversary on December 1st:) I didn't want to post yet, because despite beautifully clear MRI's, I knew something was still off.
I had c-spine and thoracic MRIs in late November. I did get my favorite radiologist, which is a bonus, I've seen him enough he recognizes me--that's a fun bond.
I enjoyed Tchaikovsky's Nutcracker Suite as my brain and spine were scanned, good times. It was way better than the singer-songwriter request, a.k.a Cat Stevens hour (my personal hell), a mistake I will never repeat.
Despite my benadryl & steroid prep, I still had a slight allergic reaction--I was really red and a little itchy. I think it's just being in a tube for an hour:) They did release me to go home, rather than the ER, so that was awesome!
The MRI's were read quickly and everything is blissfully quiet on the CNS front.
I am so grateful. It could be so much worse, but it's not.
I've had a lot of time to reflect. My first year of MS was a balance of panic with faith and knowledge. It was grappling with a disease I knew nothing about, that could turn on me at any moment. It was finding my footing on a slippery slope.
Year 2 was all about acceptance. I found peace in my diagnosis. A bone-settling peace and confidence in the various treatment methods I have chosen. It's a good place to be.
I met with my awesome neurology team, Kelsie Montgomery, PA and Dr. DeSabrio (rockstar). I love that Dr. D always pops in and visits with me. I love that they review my records the day before and are totally up-to-speed on where I am.
Long story short, I'm still in remission and I'm doing well. Yes, I still do Copaxone, although I have the option to move to Tysabri. It's up a tier in medication, studies look promising, but it can have some potential scary side effects--no shots though! It's an oral med. I decided to wait on deciding. Maybe in the summer...it's such a big decision to change meds. I need time to study and mull it over.
Neuro team is happy with the lifestyle changes and supplements I'm taking. I happily reported I feel great...except for the horrible joint pain/fatigue/nausea I feel every 4-6 weeks. It totally grounds me and it's awful. I can take Aleve to power-through, but it's awful. I gave my ideas: MS flare, medication reaction, etc.
I learned:
- Joint pain is NOT an MS thing...if it wasn't anything else, it would be classified as an atypical manifestation without a researched explanation.
- Joint pain is NOT a Copaxone thing
- Team Neuro is positive I have something else going on...so more blood tests.
Initial testing (for Lupus, RA and inflammatory markers) didn't reveal anything. I saw Paradela, my bulldog of an internist, because as I told her, she can solve a good mystery.
Blood tests are back (drumroll please)...
I appear to have Hashimoto's Disease, possible Parvo and low iron stores.
Sigh.
What the heck is Hashimotos? Isn't Parvo a dog thing??
What the heck is Hashimotos? Isn't Parvo a dog thing??
I've been fighting more fatigue than I'm used to, freezing most of the time, having voice issues, losing hair (insert sad face), suffering from killer joint pain, etc. I'm pumped to have Hashimoto's because hopefully there will be a solution!! The days of coming home and being too tired to even eat have got to stop.
This also means these awful symptoms are NOT MS, which means that my MS really is under wraps, fantastic!
Not fantastic is knowing that my thyroid is attacking itself and screwing up my hormones...this explains a lot.
Not fantastic is getting retested in 6 weeks before I look at treatment options.
Not fantastic is knowing I also might have a dog disease. Just kidding, human Parvo is an anti-inflammatory bug you contract as a child and it ebbs and flows. Don't even know what's going on there. Or the iron...well, I don't really eat much meat, so...yeah.
Game plan is to revisit my nutrition. I do a strict anti-inflammatory: no gluten, sugar or dairy...BUT, I'm lazy about it, often skip meals (don't have much of an appetite anymore), and eat what's quick--which might include (blush) my secret favorite, classic Lay chips. I need to plan and tighten it all up. I'm obviously eating something that's irritating the inner parts.
...and the waiting game, again.
There are also more positives than negatives, always, but I'm still a bit discouraged.
Apologies to people. Sometimes I'm so tired, I act stupid or rude. It's not purposeful. Yes, I still battle depression, but it's been a few months since my last bout: yay! Yeah, sometimes I bail out of events at the last minute. This is why. Thank you to so many dear friends and family who don't hold it against me.
Yes, still teaching and still working on my Master's degree in Education and Educational Administration. I'll graduate in May and probably cry in relief.
However, my faith, the support of my family, and my insatiable research skills will see me through. I've grown so much emotionally and spiritually over the past few years; I'll be ok.
So, serve up my MS with a side of Hashimoto's, sprinkled with Parvo (yuck) on top. I've got this.
Here I am at 2 years. Little bit lighter, and smiling!
So, serve up my MS with a side of Hashimoto's, sprinkled with Parvo (yuck) on top. I've got this.
Here I am at 2 years. Little bit lighter, and smiling!
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