So for those of you who follow my facebook page for my HSCT journey, Cat’s HSCT Journey, you already knew this as I posted about this the day after I got my results back. But as I mentioned in last week’s post I did have an MRI done last Wednesday of my brain and c-spine with and without contrast. My insurance will only pay for those MRI scans and not the full spine, but that’s fine with me as I didn’t really have any lesions lower in my spine, and I’d have to pay even more out-of-pocket for that, and insurance options for my county in the US suck, so everything is expensive, and it also is appearing like insurance rates in general are going up massively next year, so not even sure how I will be able to afford insurance then…But whatever, will deal with that when the time comes.
But back to the MRI results, so I ended up hearing back about them from my GPs nurse on Friday afternoon. I was a very demanding patient and asked her to read entire paragraphs of the results, which she did to humor me, and I really think she probably had no idea what exactly she was reading with all the terms used, but I knew what to listen for, so all was good. I really wanted the results to look at myself and they were supposed to post right away on the hospital’s new MyChart system, that didn’t happen. In fact to this day they still are not posted, but I was told that they will eventually show up there along with the images themselves, I’ll believe it when I see it. But I called the records office at the hospital to find out how late they were open on a Friday and if they would please humor me and print me my MRI reports. Typically you have to go there, fill out a paper, and then wait several days to 2 weeks to get the print-outs mailed to you. But the gal there ensured me that since it was just a couple of pages they would print them out for me on the spot. So I got there around 4:45pm on Friday, they close at 5:00pm and filled out the paper and within 5 minutes I had my MRI reports. I was quite happy the lady working there humored me and actually didn’t make me wait several days, obviously she could see how anxious I was to get these damn results.
But without further waiting, here is the longer version of the results. This MRI was done at 5 months 1 day after getting my stem cells back and it showed NO ENHANCING LESIONS!!!! Talk about a stressful time waiting for the results. Please note that these MRI images are being compared to my last MRIs done here at the hospital which was February 2015/March 2015, so over 1 1/2 years ago and the machine is lower quality than what they use in Russia, damn USA and their not wanting to upgrade to the newest technology, ugh. The MRI machine here was 1.5T, Russia uses 3T for magnet strength. And remember my MRIs in Russia showed at least 10 more lesions in my brain compared to my old scan here, 1-2 larger ones and the rest little tiny ones.
C-Spine (my bad area): No new lesions were detected compared to my last MRI done at the hospital. NO ENHANCING LESIONS!!! And probably the most awesome news of all, my huge lesion on my C-spine that caused me most of my issues is almost completely gone!!!!!!! The rest have all shown signs of decreasing in size or disappearing as well. Lesions in this area can paralyze you so seeing them get smaller or disappear completely is the best news you can hope for.
Brain: One new larger lesion was detected compared to my old MRI done here, but this lesion was pre-HSCT and was picked up on the Russian MRI, so no biggie, and I can pretty much tie that to my September 2015 relapse. NO ENHANCING LESIONS!!! All brain lesions are showing signs of decreasing in size and some have disappeared.
So what does all that mean??? Well it basically means that as of now my MS progression has been halted and a lot of the damage is repairing itself. It really is the best news you can hope to hear. Obviously it takes 1-2 years for your new immune system to really take off, but typically if you do not have any progression at this point in time, that’s a good sign that the procedure will be successful. I did email my MRI report to Dr. F and he was quite pleased with it and feels that the MS is halted. I also will be discussing this with my neuro in early November at my next appointment with him. The suggested protocol is to do another follow-up MRI either at the 12 or 18 month mark and then yearly after that, but honestly unless I am having new symptoms that make me question if something is wrong, I do not think I will be getting more MRIs. It’s not that I don’t want to get them done, but with how insurance works in this country and with rates constantly going up, it is really not something that I can afford to do. Every insurance plan for my county in Idaho requires you to pay your full deductible and then 20% co-pay on all MRIs and with most low deductible plans not being offered next year, it makes it very unaffordable for anyone with a regular income, especially when you fall in the gap and get zero subsidies to help pay for your insurance. But no need to do a long rant about how shitty insurance is here in the US, many people are in the same boat as me and already know how much the whole system sucks.
So how am I doing otherwise. Well most of my leg muscle tightness that I was experiencing the past few weeks has gone away. I think some was related to the car accident, other was related to the seasonal weather change and damage from the MS. Same with my pins and needles feeling around my stomach/back area. It’s something that seems to pop up with me during the fall weather change, I think the extreme temp changes mess with my damaged nerves. In reading the veteran’s group, seems super common. I am having more hormonal/menopause symptoms this week as well, the standard hot flashes, chills and night sweats. But I know that I ovulated this week, endometriosis pain told me that, and for the last few months it appears that around ovulation my hormones seem to go crazy and make the menopausal symptoms flare up. It’s the worst of all worlds I guess, stuck with still getting periods and menopausal symptoms… Then I’m still having some neck muscle tightness related to the car accident, and I’m taking muscle relaxers for that.
So not a whole lot in the way of improvements this week. I have been doing much better at eating healthy. Trying to eat a good-sized portion of fresh greens twice a day, which I really hate the taste of greens, so I do have to choke them down, salads are just not my thing….Green smoothies are a bit more appealing, but still not delicious in my opinion. I don’t really follow any particular diet, although I do still try to avoid gluten and dairy just because they tend to cause more inflammation in the body in general and I honestly do feel much better when I do avoid eating those things. I do tend to stick to a more paleo diet just because my body does better at processing those types of food, as grains and legumes have never really worked for me. I think everyone’s body is different however and what works for one person may not work for others. And when I see people claim diet will cure MS, it is always people who are selling books and profiting off their diet, or other people who hype a certain diet and then make a ton of money off their own side businesses, which makes me wonder if any of these people actually have MS or if it’s just a ploy to sell their stuff. And then the fact that many people who opt to undergo HSCT have stuck to a very strict vegan diet or paleo diet for years and continued to get worse, just shows that diet will not work for everyone. I know that diet will help with symptoms and perhaps it halts progression in some people, but it certainly hasn’t cured a ton of people out there. I do however feel that a healthy diet, high in real foods and low in processed foods is beneficial to everyone.
I’ve been trying to exercise more as well, although it rained most of last week so that made it harder to do things outside, but I’m getting more active all the time. The fresh air outside always makes me feel more energized in general, I really am an outdoorsy person, being stuck indoors is just not my thing. Still failing at the yoga, but it really is hard to find time for it when you are dealing with the daily challenges of real life as well as children, then after they go to bed I really don’t have the energy to try and do yoga. I understand everyone says you have to make time for yourself, but really with young kids, that is just plain impossible at times, unless I wake up super early or stay up late, which just isn’t going to happen, sleep is more important for a recovering body.
So that was my week! The MRI results were the highlight of the week! Hoping to get even more active this next week. And just because this post needs some type of picture, here’s a picture of my goat, Brownie up in a tree, because well goats are awesome.