2 year MS check in + new medical news

I just passed my 2 year anniversary of my MS diagnosis. I thought I’d do a quick check in.

I’m doing really great. I’ve had no new relapses. The only continuing symptoms I have are fatigue and brain fog. Sometimes my legs will ache, but nothing like the pins and needles sensation I had at the onset of my last attack. I give God full glory for this!

I have switched from Tecfidera to an infusion medicine called Ocrevus. This is because the medicine does not stay in my system for as long but its effects last longer. I would like to try and concieve again sometime next year, so my neurologist wanted to see how I would do on this drug. We can time the pregnancy after a dose and then I will be partially covered for the pregnancy.

They start you off slow, so I had 2 half doses in February and go back for my second dose in July. After that I believe my doses will be every 6 months. The only side effect I had with the first session was some flushing during the treatment, a moderate headache, and fatigue that lasted for the rest of the day. I woke up the next day feeling like my usual self. For the second treatment, I only needed a short nap at the clinic, did not get near as hot, and wasn’t able to sleep at all the night of the treatment. We think that’s the effect of the steroids.

In the fall of 2020, I was diagnosed with fibromyalgia and began treatment with Cymbalta for that. That has greatly reduced any lingering pain I’ve had. I also began physical therapy for my shoulder pain. I plan to do the same for my hips/legs soon.

In June 2020, I had some abnormal liver labs. This was mostly due to being off my medication for diabetes for a few months with moving and Covid closing things down and having to switch healthcare providers in the middle of the pandemic. My doctor ordered a CT scan to check the liver, which looked pretty good. I have a milde case of Non Alcoholic Fatty Liver disease. My labs returned to normal with proper medicine. However, they also saw an adenoma on my adrenal gland and suggested I get an MRI of it. These incidental findings are very common and usually mean nothing.

For whatever reason, the MRI was not performed until January of 2021. A few weeks before the MRI, I started having shortness of breath, heart palpitations, and excess sweating. I’d be sweating up a storm walking from my car to my kids Tae Kwan Do class in 60 degree weather. It didn’t make any sense!

It turns out, that I have something called a pheochromocytoma. In addition to the symptoms already listed, it can skyrocket blood pressure, which it is now doing to me. The MRI saw the adenoma and noticed that it was bleeding into itself. Lab tests were performed twice to confirm that I’m making excess adrenal hormones, consistent with a pheo. I will have a Dotate PET scan on March 3rd. If the nodule has not miraculously shrunk, then I am scheduled for surgery on March 12. I am also beginning an alpha blocker to help control my blood pressure.

I’ve become increasingly more open about my faith. I am believing in and praying for a miracle. If it’s not God’s will, then I know He will be with me during this surgery.

I am also moving this week and have had some pretty bad headaches due to my blood pressure spiking. My productivity will be reduced for a little bit, but I hope to be back up to snuff quickly. I’ll also be homeschooling my children, so my schedule will be different because of that as well. However, they are no longer very young and are far more independent.

So, all in all, two years have passed since what seemed like the most defining moment in my life…but I’m happier and more fulfilled than I’ve ever been. If you or a loved one has been diagnosed with a chronic illness, please think positive! You CAN have a full life!

20 thoughts on “2 year MS check in + new medical news

  1. I am so glad you are doing and feeling better. I have fibromyalja? Myself. But my doctor is treating me with zoloft and vitamin b3. It seems to work for me. I had noticed you new picture and thought you were looking very pretty and very happy. Thsnk you for the update.

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    1. Thanks! I was already on zoloft so I switched to Cymbalta. At first, we tried a lower dose and while my pain improved, my depression flared. So we increased the dose and that seems to be the lucky number. I haven’t tried b3, but I’ve done b12. I definitely felt an improvement with it too. I’ll have to look into b3! Another thing that I keep seeing in lots of different conditions is a connection to low vitamin D. I take supplements and get mine regularly checked, but I think I need to increase the dosage. So many pills…so little time.

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  2. You seem to be coping so well with all that life is throwing at you! I hope things only improve.
    I myself am just recovering from a sudden major operation and awaiting test results so I have my fingers crossed that my fears won’t be recognised. It’s all made much harder with this pandemic as I imagine it is for you so hopefully the world will get it all under control before too long! 🤞🏻

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    1. Praying for you! Yes, the pandemic certainly makes other health concerns harder. And there’s the human element too. It’s so much harder to cope with things when we have to be distanced from others.

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  3. Sorry to hear all you have and are going through. Adding you to my prayer list. I have many things going on with my body…since 1996 when I was diagnosed with Chronic Myeloid Leukemia so I can empathize with you. God did get me into a trial study which produced a miracle drug. Take care and stay safe.

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      1. I am in remission so not really “healed” but I will take that as I was originally given may a dozen years to live. The drug makes me feel tired all the time though.

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  4. Good thoughts and prayers going out to you. My sister had a Pheo several years ago and had surgery. her doctor did not follow-up and she now has tumors throughout her body. Testing at NIH lead to treatment at UPenn in December (infusion of radiation) that she is just starting to bounce back from. So please make sure you get regular follow ups post-surgery because just a few cells can cause the cancer to spread. There are several groups on Facebook relating to pheo’s and I’d be happy to put you in touch with my sister if you would like.

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    1. I’ll be praying for your sister! They’re pretty sure my pheo is totally benign, but will test it. I’ve also done some genetic testing and will be doing more. Was your sister tested for anything like that? I believe there are a few genetic disorders which make pheo and other tumors crop up. I’ll definitely keep up with follow ups! Thanks for the warning.

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  5. I’m glad to hear you are feeling well, even with all of the issues. While we all love your books, please don’t stress about the pace of your work. Do as much as makes you happy! Best of luck with your (maybe) surgery.

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  6. I am so very glad you are doing better with the MS. Not glad about your other diagnoses but I deeply admire your attitude, show of faith and the joy in your family that shines through. I have always sensed you have a lovely supportive husband. You are looking wonderful. My prayers for your continuing improvement and the most recent issues that have popped up. Blessings, Rose.

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    1. Thanks for the prayers. I do have a very supportive and loving husband! I don’t think I’d have the faith that I do about this current issue if I hadn’t already gone through the MS crisis. I really believe every trial we go through makes us stronger.

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