So this blog post is a day late, but I had a neuro appointment today (Thursday), so I held off writing the weekly blog so I could discuss that, because really the rest of my week was boring and not really blog worthy.
As I mentioned about 4-5 months ago in a blog post when I had my last neuro appointment after getting home from Russia, my neuro is 100% supportive of my undergoing HSCT. Of course prior to me going overseas for the procedure he could not openly support it just because of rules and regulations and all that good stuff. So while he personally feels HSCT is the only real treatment for MS, he cannot encourage people to undergo the treatment, the most he can do is discuss the US clinical trials. Although in my last 2 visits he has joked that with all the ridiculous things some of his patients have done to try to treat their MS, he feels that if they would spend the money on a legit HSCT treatment in a place like Russia it would be money much better spent. He seriously has had a patient pay a lot of money to get injected with something she claimed was shark stem cells, as in actual stem cells from a shark, in hopes of curing her MS. And then he finds the bee sting therapy just downright entertaining. He said over the years he’s seen everything under the sun being done in hopes of curing MS. He actually has done a lot of research on the HSCT procedure and Dr. Fedorenko and Russia since my last visit with him and he is rather impressed with their track record and procedure. He feels it is 100% legit and should have the same results as the US clinical trials.
My neuro is somewhat of a crude man and is known for his bad bedside manner, but I like that about him. And in his typical style he started out the conversation when walking in the room with the comment, “so how’s your hair coming in?” There is no friendly greeting with him, haha. So like the typical neurology appointment I got smacked with the little hammer in numerous places, did the push the leg one way and then pull it back, touched my finger to my nose with my eyes shut, tracked his finger with my eyes, etc. He was impressed with all that and for once I didn’t have to do the walking test because he said he seen me walk down the hall to the room prior and that my walking was normal. My EDSS score is now at zero, which is what he felt it was the last time I seen him as well after I got home. Then we got interrupted by his phone going off, and when his phone goes off it means it’s something important from the ER, so he took the call and dealt with that. It wasn’t really a true emergency and I think he was rather annoyed that they interupted him when it was an issue his nurse could have dealt with, but such is life.
But then we got down to business, the MRI reports and images… My hospital recently switched computer systems and the whole system is really a screwed up mess now, it took him several tries and he had to open a completely different program in order to actually compare my new MRI results to my older ones. I have yet to find a single nurse or doctor that likes the new system, new technology apparently really sucks in this case… But anyways he popped up the different images and found the ones to compare to each other. We looked at all my lesions on my c-spine and brain. As the MRI reports had noted some lesions were gone, the rest decreased in size. While reading the reports a couple of weeks ago was exciting, it really is even more exciting to see the actual images themselves and see that some of the lesions are completely gone and that others are much smaller. That is something that many doctors and neuros claim is not possible, especially when it comes to spinal lesions, those are the ones that rarely get smaller or disappear. Needless to say he was super impressed with those results, in fact he was downright astounded as that is not supposed to happen. He would like me to do another MRI in 1 year, which would be the 18 month mark just to see how things are looking then. As of now he feels the treatment was a success and he looks forward to seeing my progress. I am supposed to see him again in around 6 months which will put me close to my 1 year stemmie birthday. Unless of course something changes in the meantime, then I can drop him a message and get in sooner.
One interesting thing he did discuss in this appointment was the current DMDs on the market. Unlike most neuros, he does not take any kickbacks from the pharmaceutical companies. He does not push any particular medication for MS, he lets the patients choose, although he does firmly believe that the ABC drugs are the best for people to take if they do work, just because of side-effects, even though those are old-school injectables and aren’t as effective at preventing relapses as the newer oral meds. We got on this topic when he was looking at my blood work. We were chatting about my lymphocyte counts and he felt they’d be back to normal at around the 1 year mark, it’s when his US clinical trial patients numbers got back to normal. He brought up the medication Tecfidera, the oral MS medication that is really pushed on TV. If you watch TV in the US you have probably seen the commercials, with an amazingly healthy women pushing the medication making it look super safe, even when they comment on the commercial that it can cause PML that typically leads to death. He was saying that many of his patients on the medication have had to stop it because their WBC and lymphocyte numbers have gotten so low it was causing all sorts of other medical issues or their risk of PML became too high. He feels that medication is quite dangerous and was pushed through trials too quickly. He however also isn’t a fan of Tysabri because of the rebound effect that occurs when people have to stop that medication, which many people end up having to stop it because their PML risk becomes too high. Which just goes to show that many of the freaking MS medications on the market are more dangerous for you then the actual HSCT procedure itself.
And in his typical fashion when leaving, he shook my hand and said “I don’t want to see you again for 6 months, it’s not that I don’t like you, but not seeing you is a good thing when it comes to MS, continue to beat MS.” So that was my appointment, can’t complain. He’s impressed! I was hoping to post some pre-HSCT and post-HSCT MRI pics in my blog for the 6 month mark, but my hospital has yet to figure out their MyChart system online and they have yet to post the MRI images, they still haven’t even posted the freaking MRI report yet…. So it is looking like that won’t happen for a while… I do plan to request my latest MRI reports on a CD soon, but that can take 4-6 weeks before it shows up in the mail, so not looking promising for my actual 6 month mark, such is life. When I eventually get the new images I will try to do some before and after comparisons just because when you have MS you are told that lesions cannot just disappear or get smaller, especially when on the C-spine. I like to prove people wrong!!!
So onto the rest of my week. As I said at the start, my week was pretty boring. It started off just like the last week ended, not a lot of energy and still dealing with acid reflux issues. I’m taking my generic Prilosec twice a day and that has solved the acid reflux issue for now. I’m taking a 2 week course of that and hoping to keep that away for a few more months, hopefully permanently. And I’m now starting to take more probiotics as well. A reader suggested taking a very high dose probiotic, but super high dose probiotics are not really recommended right at the start, especially if your lymphocyte counts are still a little lower. I’m starting on a lower strain of probiotics as well as eating some yogurt and getting into eating more probiotic rich foods. In another month or two I plan to take a much higher dose probiotic. Many HSCT veterans do suggest taking a very high dose probiotic around the 9 month mark to get your gut health back to normal, as well as eating/drinking particular foods to try and heal the gut.
My week has ended on a really high note. For the past 3 days I have felt amazing, like really amazing. If I didn’t have a couple lingering MS symptoms I’d feel like a normal healthy human that never had MS to begin with, well minus my ridiculous “chemo curls” hairstyle that I have going on. Needless to say the bandanas and stocking hats are not going anywhere anytime soon… I’m not sure what happened, but I woke up one morning and just felt amazing. Full of energy, no fatigue at all, it’s something that now seems so odd and foreign to me. According to many HSCT veterans, the 5-8 month mark is when you often feel worse for a while, they say it’s the chemo finally getting out of your system and your body figuring out it’s new normal. Many people have 1-2 months of bad symptoms and then that is when many improvements start happening and they start feeling normal again. Others say at around the 6 month mark is when they started feeling more like themselves again and then were good to go. Regardless, at the moment I feel great, so I am loving it. I do fully acknowledge that tomorrow could be a bad day and I could feel like shit for a week or two straight, so I really do appreciate the good days.
So at the moment what lingering MS symptoms do I have that are sticking around or come and go? Lets start with my feet. My feet are mostly numb and I don’t have much feeling in them. Since HSCT I did regain some feeling in them, so I can feel hot and cold and I certainly can feel when I crash my foot into something now, which can be a pro or con depending on how you want to look at it, haha… Another pro about numb feet, tickling my feet doesn’t phase me at all, can’t feel that. This is something that most likely will not go away for me, I’ve had this symptom the longest and it’s caused by a spinal lesion. I may have improvement in the future, I may not. But I can live with that. Then my hands. Prior my hands were numb most of the time, I couldn’t feel textures, hot or cold, or any of that. Now I can most of the time. There are days when my hands have some numbness and tingling, but most days it isn’t very apparent, it is still there to an extent, but since it’s barely noticeable, it’s not a big deal. Will this go away completely in the future? Not sure as this is tied into the same spinal lesion that causes my foot numbness. Then we have the numbness and tingling in my abdomen/stomach region that comes and goes. This is a symptom that is quite annoying at times because when clothes rub on the skin, it’s more apparent than it is otherwise. This for me is more temperature/humidity related, it’s worse in the colder months of the year. Will it ever go away, probably not, this again is caused by that same spinal lesion. Then at times I do still have occasional cog fog and tightness in my lower legs. That may completely go away over time or it may not. But overall I can’t complain. My lesion load was very high in my c-spine and those lesions aren’t supposed to ever go away, even Dr. F said damage caused by those will probably not go away. But progression is halted and I can live with the symptoms I have.
Then this week was Halloween, my favorite holiday! We planned to take the kiddos to a trunk or treat event in town, but we got there when it started and there were several thousand kids there is a huge snaking line, so we said fuck that and went to a couple of relatives houses instead. And then my oldest ate a peanut butter cup on the way home, then throughout the night she vomited all over the bed, floor, herself. Good times. Thinking she has developed an intolerance to peanuts since the last few times this has happened she ate something peanut related. Going to have to get her checked for food allergies at her next checkup. But now that Halloween is over everything in town is Christmas related, very depressing.
So that was my week. Sometime in the next week or two I do plan to do a blog post on all the possible side effects of the HSCT procedure, including all the ones that people don’t want to discuss publicly. Then at the actual 6 month mark, I will do a more in-depth update that actually goes into more details about how I am doing now and comparing this pre-HSCT to now. But to finish this up for the week, here’s a couple of pics of myself from this week. One taken with a praying mantis just for fun, the other on Halloween with one of my several Halloween related bandanas.