One Year Post-HSCT Update

I cannot believe one whole year has passed since I underwent HSCT in Russia.  Still seems so crazy to think that I went to the other side of the world to undergo a medical procedure that I couldn’t get in my own country.  At times it seems like all this happened just yesterday, but then at other times it seems like it never happened at all.  But 11 May 2017 was my 1 year birthday, I did nothing to celebrate the occasion, was just another day for me, in fact I think I was at work.   I’m going to cover a lot of things in this blog post, so it’ll be a mess, but bear with me.

First off, lets look back at the past year.  What are my thoughts on recovery now that an entire year has passed by?  Well to be quite honest at the start of all this, I was curious myself on how I would feel about the whole recovery period once I got to this point.  I mean it’s hard to know what recovery will be like when you hear second-hand accounts on facebook groups, most people who are 1+ years out, say recovery was a roller-coaster but survivable and not too bad, but then when you are going through it yourself it’s a whole different ball game. So for me personally looking back on recovery, now it seems like it really wasn’t all too bad, although I know for a fact there were really rough times and I hated it, but once you get to a certain stage you forget about that and it all seems like it wasn’t that bad. Hence the reason unless you talk to people in the different stages of recovery, you will never get super honest answers on how recovery is, because the further you get out in your recovery period, the easier everything seems to have been.  But the term roller-coaster is completely accurate, recovery is a crazy ride.

But for me recovery wasn’t as bad as it was for a lot of people, and even now I am still in the recovery process, most people say it lasts for around 2 years, and even then it is a lifelong battle. I did luck out in a lot of regards in my recovery, I didn’t end up with some of the nasty chemo side-effects that plagued some people and I also never really had any real bone pain, which is fairly common amongst veterans. The first few months sucked big time, there is no nice way to put it, at times it was pure hell. I never knew what to expect day-to-day, some days were great, others felt like a relapse, which is always a horrifying feeling, even though you know it’s temporary and normal and will go away, still scares the shit out of you.  Energy level totally sucked at the start, fatigue was an issue then.  Old MS symptoms popped up all the time, it was a guessing game at what would pop up next.  Would the bladder decide to get all spastic, hands go numb, MS hug, fatigue, cog fog, and the list goes on and on.  But through it all I tried to remain pretty positive, which is so important during recovery and something Dr. F really preaches. And as time went on the good days outnumbered the bad and the good days were really good and it was just amazing, but then the bad days would hit and then that would really drag you down both physically and emotionally.  Recovery is far worse than the treatment itself and it really can be a battle and not anything to take lightly.  And as I said above, recovery to me really is lifelong.  Even with the disease activity stopped, the damage is there, and while some may reverse itself, a lot won’t, so throughout life you will be plagued with various MS symptoms when you get too tired, stressed, sick, too hot, the list can go on and on.  And it sucks big time, but you know what, it’s what I got to deal with, so I suck it up and enjoy life, because I know how much worse it could be.

As I wrote in my last blog post I did have a one year follow-up visit with my neurologist, I opted to not do a MRI, mainly because it is just too expensive and it would just tell me what I already know. My neurologist actually stated at the appointment that he felt there was no need for any future MRIs unless the MS became active again, and even then what the hell is the point really, I mean it’s not like the MRI changes anything in that regard. But at that appointment he did look over the MRI I had at the 6 month mark and was still amazed at what it looked like.  As I said back then, several of my lesions disappeared and most of the rest got much smaller in size, the big deal about that being that my gigantic c-spine lesion shrunk in size a fair bit, which is really unheard of.  I passed all the tests he gave me, and my EDSS score is a big fat ZERO. My disease activity has been halted!!!  But even he said that I am stuck with the existing damage, so unless my body continues to heal itself, I’ll be plagued with old symptoms randomly throughout life, which I am okay with. I also did blood work at the 1 year mark as well, which I will discuss more later in this post.  My last couple blog posts actually dealt with my neuro appointment and 1 year blood work, for those that are curious on reading those.

So let’s go over some things about recovery.  Things can go wrong during recovery and they occasionally do.  I had a DVT in my left jugular vein obviously from the CVC that was in there for several weeks.  I was on blood thinners for a while and with DVTs they usually end up being reabsorbed by the body at some point in time in the future.  But I also do still take supplements to try to keep my platelet count on the lower end of the spectrum, which most of my blood work has shown that to be accurate, which means I bruise and bleed easier than a lot of people, but I’ve always been that way, and even when completely healthy pre-MS my platelet counts were on the lower end of normal and I’ve always bruised easily. My stem cell sister from Australia ended up with engraftment syndrome that almost killed her because the doctors couldn’t figure out what was wrong with her shortly after she returned home.  I mean literally at one point in time doctors gave her 24 hours to live if they couldn’t figure it out, terrifying for her and her family and seeing pics of her in that state, but also alarming for others who have and would be undergoing treatment as well wondering if it could happen to them. It’s very rare but can happen.

There is also the fear of developing AVN (Avascular Necrosis).  This doesn’t just pertain to those who have undergone HSCT, but for anyone who has ever taken steroids, which basically almost everyone who has been diagnosed with an autoimmune disease has taken steroids. Oral steroids like prednisone can lead to AVN, but of course the major culprit is IV steroids, methylprednisolone (Solu-Medrol).  I mean very few people with MS have not done at least one round of IV steroids for a relapse.  IV steroids have a higher risk of AVN associated with them because they are given in such high doses.  Some research shows that just one 4-5 day course of IV steroids gives you a 1 in 10 chance of developing AVN, the odds are not in your favor.  However I don’t think many doctors opt to tell people that before they give the IV steroids.  I mean it is listed in the side-effects, but they don’t tell you how often that happens.  So of course if you take many courses of IV steroids in your life, or say in the case of HSCT when you basically are on some type of IV steroid most of the time, your risk of developing AVN probably gets higher.  I mean some of the HSCT experts on the HSCT groups would say that isn’t the case, but there are sure a shit-ton of people who had HSCT done that did indeed develop AVN, and as more and more people have it done, there is certainly much higher numbers than 1 in 10 that are developing AVN.  One of my stem cell sisters was already diagnosed with AVN in both hips and will be undergoing hip replacement surgeries later this summer.  A lady who was treated the month after me also is undergoing double hip replacements this summer and in her situation may need to have other joints replaced in the future.  Plus I know numerous other people who have needed to have this done.  Typically many of them are older patients in their 50s, but it also is popping up in patients in their 20s and 30s as well.   So basically if you undergo HSCT there is a damn good chance that you will need joints replaced in the future, although if you ever had IV steroids, the odds are not in your favor.  So there is always that thought in the back of your mind.

Also in the time since I got home from Russia I’ve had a facebook friend of mine undergo HSCT and has had various issues happen since getting home, including what appears to be recurring sepsis, which seems to not be as rare as one might think.  Also a lady that followed my blog passed away during treatment from what they assumed to be a severe allergic reaction to the chemo.  It’s difficult for me to write blog posts writing how things are going for me, when others are struggling with recovery, it’s almost like rubbing salt in their wounds, but I said from the start I’d be completely honest in my blog posts and that is what I am doing.  It’s why I’ve done controversial blog posts in the past, because I think people need to know the truth.  I mean HSCT is not a basic medical procedure, it has a very real risk of death and there are a ton of side-effects that can happen in recovery, some not so bad, but some can kill you.  And then the treatment can and does fail for some people.  It’s something I feel everyone should research heavily prior to having it done and understand everything that can happen.  That being said, MS or other autoimmune diseases will also kill you and depending on how bad it is, it will destroy your quality of life, so for many people it’s worth the risk and the recovery period.

So now the part of this post that people are probably most curious about, how am I doing 12 months after HSCT?  What were my MS symptoms pre-HSCT, how have they changed after HSCT and what are they like currently?  For those who have not followed my journey, my EDSS score prior to HSCT was 1.5, I was diagnosed with RRMS in February 2015 and had symptoms since May 2014, my MS was very aggressive in my C-spine, I was relapsing every 3 months even on DMDs. My second major relapse really spiked my EDSS score for a while and I pretty much had to teach myself how to walk again and struggled with many things for months. So without further ado, here’s a rundown.  I copied and pasted this from my 6 month post and am adding on the 12 month update.

Vision Problems/Optic Neuritis:  So pre-HSCT vision problems were one of my biggest issues.  I was diagnosed with optic neuritis in both eyes (left eye being far worse) which they say is super rare, but in talking to those with MS, seems pretty freaking common. Pretty much all the time I had very foggy/blurry vision in one eye or the other.  Rarely was it both eyes at once, but basically I could barely see out of one eye or the other at all times.  I also had issues with getting my eyes to focus together, it’s hard to explain that one exactly, but those who have dealt with that, know what I mean.  During bad flares of that I also would have excruciating eye pain, to the point you’d want to rip out your eye to relieve the pain. While I was in isolation in Russia after getting my stem cells back, my vision went 100% back to normal.  No fogginess and my eyes had no problem focusing together anymore.  At the time it was hard to say if it was all the steroids causing that or if it was the HSCT procedure.  Well since being home my vision has been perfect in that regards, no issues at all.  At the 6 month mark, my vision is back to normal.  The only issue I do still have with my eyes that will probably stick around is floaters in the eyes, especially when in bight light, but I’m fine with that, I’m just happy to see clearly now.  Now onto the 12 month mark, my vision is still as it was at the 6 month mark.  Still have the floaters in my eyes, but my vision is still normal.  I mean from my pre-MS days I do have a bit of color loss but otherwise I can see normally.  I do however think since the last time I went to the eye doctor, which was pre-HSCT, that my eyes have actually improved a bit, and once my new health insurance kicks in and I have vision insurance, I really need to get my eyes checked and get my contact prescription updated.  So no more optic neuritis for me.

Cog Fog:  Pre-HSCT this wasn’t a huge issue for me.  It was an issue, but not one that majorly impacted my life. I had a lot of times when I didn’t feel with-it, where I would have major problems focusing, would often forget words and completely forget what I was saying.  While in isolation in Russia one day it was like the fog lifted from my brain, I could think clearly again, really an odd feeling when that just happens suddenly. Since I’ve been home that has come and gone at various times, usually it happens when I am overly tired or sick.  But at the 6 month mark that issue has pretty much gone away. But on days when I am lacking sleep it does pop back up.  Caused by existing damage in the brain that may or may not ever go away.  At the 12 month mark this isn’t a huge issue for me anymore.  I mean it does pop up a bit when I’m sick, stressed, or overly tired but in no way is it anything like it was pre-HSCT.  I won’t lie there are still times when I am talking to people and after they say something it takes me a few seconds to completely process what they are saying before I come up with a response, my brain occasionally needs a bit longer to process things, but as time goes on this is getting better and better.  When I am tired I also do occasionally fuck up words that I am trying to say, again it is getting better with time. I think a lot of that will just depends on how the brain heals itself and how it rewires itself, but a year later, it is way better than it was before, can’t complain.

Arm Weakness/Leg Weakness:  Pre-HSCT this was a major issue for me at times, especially when it came to arm weakness. I struggled to lift my youngest child who weighed less than 20 pounds, struggled to move things around and had no grip strength in my hands at all.  Literally if I would try to grab onto monkey bars and hang, my hands and arms would give out and I would fall to the ground. My legs often would give out as well and I’d fall over.  I couldn’t walk for long distances because my legs would just give out.  Horrible for a person like me who is super outdoorsy and loves to hike. I could not run at all, literally if I tried, I would fall on my face, my legs couldn’t handle the force of hitting the ground when it came to running. During HSCT in Russia this really came out in full force with the chemo, I really struggled to push open the door to escape the hallway to get outside, it also continued after I was out of isolation.  After I got home this gradually got better.  I also did push myself and exercised to try to improve this aspect.  My goal pre-HSCT was to be able to get across a set of monkey bars again without falling down.  I managed to accomplish that about a month or two ago and could even jump down from them and land on my feet and walk away without my legs giving out and crashing to the ground, I posted a video on my facebook page of that.  I also am able to run again.  I am not comfortable running fast, but I can run.  So at 6 months out I’m doing pretty good in regards to this.  There are still good days and bad days when it comes to this, I’m still on the recovery rollercoaster, so some days running would probably not be a good idea.  So at the 12 month mark I think this hands down is the biggest improvement I’ve had, it’s been amazing. I started working around the 9 month mark after HSCT, I work at a pretty demanding job, it involves a lot of walking and a fair bit of heavy lifting. On average at work I walk between 7-10 miles a day and I lift quite a few boxes that weigh 40-60 pounds.  It was a bit difficult at the start, but now it’s no big deal and I can do it with no issues and a friend told me I probably do more physically demanding work than most people in their early 20s that are completely healthy, so there’s that. So the arm strength and leg strength are pretty good, are they what they were pre-HSCT? No, and they most likely never will be.  I do still have a big of leg weakness when I get overly tired or stressed, usually on that damn left leg, but it’s not that bad.  I can run now, which that in itself is just fucking amazing, considering at the start of my MS journey I couldn’t walk by myself without falling over. Do I feel comfortable running? Not really, I won’t lie.  I don’t trust my body yet, it’ll take quite a while to regain the trust of my legs, I’m honestly too scared that my left leg would give out and I’d end up falling and hurting myself.  But you know I’m fine without running, I’ve never been a runner and don’t have the desire to start. I’m content with where I am with this.  So all in all at the 12 month mark, I can’t complain.

Dizziness: Pre-HSCT this was an issue that I battled with off and on.  Some days it was really bad, other days it wasn’t there at all.  Temperature changes really made this issue flare up for me.  Post-HSCT this issue has pretty much gone away for the most part.  It does pop up from time to time, usually when I’m overly tired or am not eating very healthy.  Following a diet of not eating much in the way of processed food really seems to help with this issue. So at the 12 month mark I really don’t have much of an issue with this anymore, it does pop up once in a while, but not to any bad extremes. When I was sick a few months back it came back pretty bad, but when I got over that, it went away.  I do notice at night when I am really tired I can get a bit dizzy, and then if I do get over-heated it does pop up a bit until I cool down, but it has improved quite a bit. I’d love if it would go away completely, but who knows if it will.

Balance Issues/Vertigo: Pre-HSCT balance issues were a big problem for me, especially during relapses.  But even on good days my balance really sucked, I couldn’t walk a straight line and I couldn’t balance on one foot at all, attempting yoga and doing many types of exercises were out of the question because I would constantly fall over when trying to do certain poses. This was depressing for me because in the past I had amazing balance, so not being able to do much without falling over really limited my past activities.  Vertigo prior to HSCT was really bad during relapses and was off and on otherwise.  It didn’t really affect daily life too much for me, but a lot of times in the evening when I was tired, it would really come out and I’d have to just lay down because everything was spinning.  Post-HSCT my balance has greatly improved, I doubt I’ll ever have the amazing balance I once did, but I can now balance on one leg and at least do yoga poses and exercise without falling down.  I’m not as concerned about getting off-balance when walking and falling over like I was pre-HSCT.  Vertigo isn’t really an issue for me anymore, sometimes when I am massively over-tired or sick it will come back, but considering it isn’t really an issue anymore.  So at the 12 month mark this has greatly improved.  My balance is fucking amazing, yep it’s true.  Is it as good as it was pre-MS, no, but then again I had way better balance than most other normal healthy people, so I’d say my balance is pretty much like most healthy people at the moment. I can balance on one foot, hop up and down on one foot, stay in various odd yoga poses for long periods of time.  I can run on a super narrow log and jump while doing that, without falling off, so I’d say it is much improved. The vertigo has greatly improved as well.  I don’t really battle this much at all, except when I am sick or sometimes when I am overly tired.  So I’m happy with the improvements here.

Heat Intolerance/Cold Intolerance: Issues almost everyone with MS faces. I didn’t have MS all that long before undergoing HSCT, so I really only had 1 pregnancy free summer and 2 winters with MS to base my experiences on, but this wasn’t as big an issue for me as it is for some people.  I live in an area with temperature extremes, 100+F temps in the summer and way below freezing temps in the winter. The heat bothered me most when the temp was 90+degrees outside and when it would get 100+ it often would immobilize me.  Days like that would make me not be able to really do anything at all, other than the bare minimum needed to survive. In the winter months, the cold would make me have bad spasticity and muscle tightness in my legs where it would make them feel super heavy and hard to move.  So it was a lose-lose when it came to seasons, spring and fall were the best.  Post-HSCT this has seemed to improve.  We had another hot summer here and there were only a few super hot days where I found it hard to function, but had no problems being outside in the sun and enjoying life, things I could not do the year before.  As for cold weather, we are just approaching that season now, but so far the leg muscle tightness and heaviness has not been as bad as in the past.  It is still there at times, but not as problematic as before, we’ll see how things go as winter progresses.  So the 12 month mark, I made it through the winter and I’m back at another summer. Winter wasn’t bad for me, we had some super cold days and a ton of snow.  The cold did cause some muscle tightness in my legs, but not to the extent as before.  I however can always tell when it is going to rain and or snow because the atmospheric changes do cause my leg muscles to tighten up.  So I guess when older people joke about how it is going to rain or snow because they have more aches and pains, I guess I’ve reached that status in my life now, haha.  At least I’m more accurate than the local news meteorologist….  As for the heat, we’ve had a couple weeks of 90+degree temps, with a fair number of days going over 100 degrees, that is in Fahrenheit. I’m doing well in the heat.  I do struggle a bit in the mid-morning when it starts to really heat up, my body takes a while to adjust to the hot temps because it literally goes from the 50s or 60s to over 90 degrees in under 2 hours. But once my body gets adjusted it’s not too bad.  I’ve spend some of my days off working out in the heat and I don’t have any issues.  Which considering pre-HSCT I’d basically be stuck in the house being unable to do much of anything during the hot temps, I’m happy with the improvements.

Fatigue: Everyone always asks about fatigue, which I think is the biggest issues with MS.  Pre-HSCT fatigue wasn’t a huge issue for me, usually when it would occur it would be in the middle of the day when I just couldn’t function for a while, then suddenly I’d be back to normal again for the rest of the day.  But I could never get enough sleep.  It was a struggle to stay up till 10pm and I’d often go to bed earlier than that, and then in the morning I would have slept in super late if I could have. Post-HSCT this issue hasn’t been too much of a problem.  I’m still in the rollercoaster stage with ups and downs, but I don’t have all too many days where I feel fatigued during the afternoon, seems like on days that it happens I’m overly tired or we have some crazy temp changes going on outside. And as for sleep at night, I no longer have issues staying up late at night, I often stay up till 11pm or midnight and get up around 7am. In fact during the presidential election I stayed up till 2:30am watching it play out and had no problems with that.  Given I was a person that pre-MS would only require 4-6 hours of sleep a night, it appears I’m getting back to that routine, although I do try to get 6-8 hours a night.  So I am no longer worthless every evening and I can actually enjoy some free time after the kids are in bed.  At the 12 month mark fatigue isn’t really an issue for me anymore, it does pop up once in a while, normally when I am lacking sleep, which occasionally does happen when my youngest refuses to sleep at night, and while it sucks, I do know that when I catch up on sleep it will go away. I do work now and I tend to work afternoons and evenings, so I often stay up till midnight or later every night and get around 7-8 hours of sleep each night and I do just fine with that.  Some days I wake up earlier and do fine with around 6 hours of sleep.  I do however try to get 7-8 hours of sleep each night because I do understand how important that is for brain health. So in that regards I’m mostly like a healthy person would be.

Numbness/Tingling/Pins & Needles Sensation:  Hands down this was one of my worst issues pre-HSCT.  For those who have followed my blog you know that my MS was aggressive in my c-spine, I have a large lesion load there and I have one huge lesion that almost covers my entire spinal cord, when diagnosed initially my neurologist stated that I was lucky that this lesion didn’t paralyze me and he said he doubted I’d be able to walk normal again after I recovered from that relapse, just because it is in the worst spot possible to have a lesion in the c-spine. After several months I was able to walk fairly normal again, but the one issue that constantly remained was numbness, tingling, and pins and needles feelings in my hands and feet.  Up until I had HSCT my feet were 100% numb, I had pretty much zero feeling in them unless I was on steroids, I constantly would crash my feet into things and horribly bruise them and not even feel it.  My hands also were mostly numb to the point where I would wear cutting gloves when using knives so I wouldn’t cut myself and I also had to be careful around hot and cold things because I couldn’t feel temperature at all. I also would often have the pins and needles sensation all around my stomach/abdomen region which was really irritating when touched by clothing.  Post-HSCT these thing have improved somewhat.  Dr. F in Russia even told me the chance of ever regaining full feeling back in my feet probably would not happen just given how bad my lesion is and it’s placement. I do have almost full feeling back in my hands, I do not know if it will ever come back completely, but I have enough feeling to at least be able to cut things safely, feel heat/cold and feel textures.  As for my feet, I have regained some feeling back in them.  I can feel pain if I crash them into things and can feel things if I touch my foot on them, although tickling them gets no response out of me at all.  I really don’t know if that issue will ever improve, but I’m content with how it is. Then with the pins and needles feeling around my stomach/abdomen it isn’t as bad, but it does come and go periodically.  With all the symptoms they do periodically worsen at times and then get back to what I’d consider their new normal.  It’s much like before you have HSCT, you have the damage there and any little thing can make the issue flare a bit, lack of sleep, sickness, stress, etc.  So at 12 months how are things with this.  This is the symptom that drove me crazy at the start of my MS journey, I mean the pins and needle feeling in your hands and feet non-stop for months takes a while to learn to live with, it just sucks big time.  You get used to it and it becomes part of life, but jesus at the start it is miserable. Let’s start with my hands.  At times I have full feeling in my hands, it is literally the strangest feeling ever to have that, sounds strange I know, but when they are numb for so long, it’s bizarre being able to feel things. At times they are slightly numb and it’s difficult for me to feel with my finger tips and to pick up small objects, it comes and goes, and I fully acknowledge that is just what happens when you have the damage, I mean I’m content having any feeling in my hands, seriously don’t take that shit for granted, it sucks when it is gone. Now onto my feet, so this is where I’ve been told to just accept the lack of feeling in my feet, it’s there and part of life.  As of now I do have some feeling in my feet, I’d say depending on the day it is between 50-75% of normal feeling.  I do still have the pins and needles sensations part of the time, and while I can feel hot and cold and pain, I don’t have full feeling in them. And you know what, I’m cool with that, considering how bad they were at the start, any improvement is good.  And for the pins and needles sensation around my abdomen, the only time that pops up now is when I am on my period and a few days prior to that.  So I always know when to expect that.  So all in all I can’t complain.  All this is caused by my large c-spine lesion, which in the MRI was healing itself, but the damage was done and the body has to rewire itself, so we will see what the future holds, never really know.

Lhermitte’s Sign: For those unfamiliar, it’s common with MS.  You bend your head forward or a certain way and you have an electric shock feeling shoot down your body and through your limbs, it can be painful for some, but usally it’s just more uncomfortable.  This was an issue pre-HSCT that I had most of the time.  Post-HSCT this hasn’t really been an issue.  When I am overly tired or stressed it pops back up, but for the most part it is gone.  For me I don’t consider this a bad MS symptom as it really didn’t interfere with my life, but thought I’d mention it anyways.  At the 12 month mark this is much like it was at the 6 month mark.  It pops up once in a while, then goes away.  Seems to often occur more frequently after I’ve done more lifting and bending at work, so often in the evening, but not an issue in the mornings.  It’s a once in a while thing, so who knows.  It isn’t really a big issue for me, never was.

MS Hug: Inappropriately named, as it should be called the MS Grip of Death or something similar. Pre-HSCT this issue would pop up for me once in a while, it was common during relapses, times of stress, and then sometimes it would just show up for no reason at all.  It’s an annoying symptom to say the least.  Post-HSCT I haven’t dealt with that issue at all and I’m thankful for that.  At the 12 month mark, still not really an issue.  Did pop up a bit when I was sick, but not since then, hopefully it’s gone for good, time will tell.

Spasticity/Muscle Tightness:  Pre-HSCT I had this issue in my lower legs a lot of the time.  I really think legs are the most common place for this to occur for those with MS. For me this was more seasonal, it happened more in the colder winter months and then also would pop up with huge temperature swings year round. I also occasionally would have it pop up in my neck. It wasn’t a life changing issue for me, it didn’t really affect my walking or life, but it did make it impossible to run and made exercising difficult and I couldn’t walk for long distances without my legs really causing me issues. Post-HSCT this issue has still popped up once in a while and stills plagues me a bit now that the weather has cooled down for the year, from seeing veteran’s discuss this issue, it seems common for these seasonal issues to continue to stick around, pre-existing damage may not repair itself so you are stuck with it. But for me it isn’t as bad as it was before, it doesn’t affect how long I can walk and it doesn’t affect exercising at all.  Only thing it really affects me with is running, while i can still run when it is acting up, I am more concerned I’d fall and hurt myself. Since HSCT this issue has come and gone when it comes to my neck, it’s an issue I’ve battled since being home, although I don’t necessarily think this is related to the MS anymore, but more related to have the neck line in, many people have these neck issues after returning home, and for most it subsides after a year or two.  And it isn’t caused by the neck line itself, more just because of how you position your neck when the line is in, and for women especially and those with less neck muscles, the issue can be worse.  So hopefully that will eventually go away, until then I occasionally use muscle relaxers and do a lot of stretching and that does solve the issue.  At the 12 month mark I am happy to say that I have not had any neck spasticity/muscle tightness issues in months and hopefully it stays that way.  I do occasionally have muscle tightness in my legs during the winter or when it is going to rain or snow, but it’s not as big of an issue as it was in the past.  I think it will always stick around, but considering it’s not that big of deal.  As I mentioned in the past, I certainly wouldn’t attempt running when it is acting up, but I don’t really plan to take up running, so not a big deal.

Bladder Issues: An issue not talked about much publicly by those with MS, because who wants to discuss such a personal issue with others, well apparently except me at this moment, haha.  I did not have much in the way of bladder issues before being treated for HSCT, but it was there. I kind of had it on both ends of the spectrum, I’d had times when it was a struggle to actually get myself to pee, then there would be other times when it would be a rush to the bathroom because I knew I had to pee and some would come out regardless. I’d also have bladder spasms at times which makes you feel like you have an UTI when you really don’t. The joys of MS affecting your bladder. Post-HSCT I haven’t really had any issues in this regard, sometimes I still do have bladder urgency, but never to the point of thinking I was going to piss myself.  I do still have some bladder spasms at times, but they are far and few between. This issue is one that does seem to improve for many after HSCT.  So at the 12 month mark, this isn’t really a huge issue.  If I drink a lot of liquids and feel like I need to pee, I make sure that I actually go to the bathroom and pee otherwise I probably would leak a bit, although it’s hard to say if that is MS related or childbirth related, since that seems to happen to a lot of women in general as they get older. No MS related bladder spasms either.

Endometriosis: This is not caused by MS, but since there is a strong correlation of those having MS also having endometriosis, I thought I would mention it. Pre-HSCT my endometriosis pain was horrible, especially when ovulating, during my period and a few days pre and post period, then also it would randomly pop up throughout the month. My pain was severe at times and really annoying. Post-HSCT I have had my monthly cycle return after about 3 months and since my hormone levels returned to a more normal level I have not really had much in the way of endometriosis pain.  I still can tell when I ovulate as there is slight pain, and periods are probably a bit more uncomfortable than they are for a regular person, but the pain has subsided for the most part.  I assume it’s mainly because of muscle tightness occurring in the abdomen because of MS and afterwards if that issue is resolved there is less pain happening.  I really have no idea, but for me the pain has improved, so I’ll take it!  At the 12 month mark this has still really improved since pre-HSCT times, but for the past 2 months my hormones have been all out of whack and my periods are all fucked up, they had been fairly consistant at every 28 days, then I skipped a month, then they started coming every 2-3 weeks, which fucking sucks.  So I’ve had more endometriosis pain due to all the damn ovulating and periods.  But I am fully in peri-menopause now, so I have a 50-50 shot of going into full menopause, which I still am really hoping for, or going back to regular cycles.  I think I’ll be stuck in several years of hell until then.  So all in all, pain better than before, but still there a bit.

Anxiety/Mood Swings/Headaches: I think this really comes down to where your lesions are in your brain if you have these issues or not. For me after being diagnosed with MS I’d often get bad headaches that turned into migraines.  Not super common but would usually have one a month.  I also would have killer mood swings for no apparent reason.  Then after a relapse in September 2015 I started having some anxiety attacks where my heart would go crazy and it was quite unpleasant. Post-HSCT I do still have some of these issues.  I do occasionally get headaches but most are related to being dehydrated so I don’t think they are MS related. Mood swings do still happen at times, but they aren’t as common or severe as before.  And then anxiety issues do still pop up for me, not to the extent as pre-HSCT but they do happen and I don’t know if that is related to MS lesions or the chemo.  As I’ve stated in previous blog posts anxiety and depression are very common side effects of the HSCT treatment itself.  At the 12 month mark the headaches aren’t an issue at all really.  I had one bad migraine a few months ago that lasted around 12 hours, nothing crazy, and the only other headaches I’ve had since then were sinus ones related to my allergies and being all congested. Mood swings are much better honestly, I can notice a huge difference there.  This is something that is improving all the time, but I’d like to see a bit more improvement there, lack of sleep and stress can really trigger those. As for anxiety….Well fuck, it still pops up and I hate it, absolutely hate it, but unlike before when it would just pop up out of the blue for no reason, now it’s caused by stress, the last couple months have been fairly stressful in my personal life, my youngest child has some medical issues and these last couple months were all sorts of appointments and all the shit that goes along with that.  But all that stuff is completed now and my life feels so much more stress-free now so my anxiety levels have really dropped as well. So we will see how that improves in the future.

Back Pain: This is an issue that many doctors and neurologists claim is not related to MS in any way, shape or form.  I disagree.  And back pain seems to be a symptom many with MS have. Throughout my life I did occasionally have a bit of back pain after working certain jobs, etc. but it was only after I was diagnosed with MS that my lower back pain got so much worse.  At times it was excruciating by the end of the day.  My back muscles were so tight that no amount of massage would help them at all. I assumed it was just something I was stuck with.  While I was in Russia in isolation I noticed one day that my back pain was gone.  I assumed maybe it was because of the beds there or how I was sleeping, but the pain continued to stay away after I got home. Now 6 months later I rarely have any lower back pain at all and my muscles there are not nearly as tight.  For me I think that the MS was causing my back muscles to get super tense and caused me horrible pain.  At 12 months this is greatly improved.  I have pretty much no back pain at all, I might be a bit sore after doing a bunch of lifting at work or doing certain tasks around the house, but nothing at all like it was pre-HSCT.  So regardless of what doctors say, I so say it was caused by the MS and isn’t really an issue anymore.

Swallowing Issues: Back to my pesky large c-spine lesion causing me issues. After being diagnosed with MS I started developing some swallowing issues.  Basically where it felt like there was always a large lump in my throat that wouldn’t go away.  It would make swallowing difficult at times especially with certain foods. This wasn’t always an issue with me, it would show up for a few weeks, then disappear for a month or two, then pop back up again. Post-HSCT that issue has pretty much disappeared.  I do have times where I feel I do have a lump in my throat, but those occasions are far and few between and I almost think that when that happens now it may be related to my acid reflux issues that I’ve been dealing with as it usually occurs when they flare up.  At 12 months this isn’t really an issue for me anymore.  And hopefully it stays like that.

Nerve Pain: Pre-HSCT this was an issue that would come and go for me.  Luckily I was fortunate enough to not deal with this on a regular basis and I truly feel sorry for anyone who deals with it every day, it is brutal. But once in a while it would flare up, typically for me it would start in my spine and shoot pains down one of my arms, usually my left arm and usually would stick around for 1-2 weeks and then just disappear for a few months. Post-HSCT I haven’t dealt with this at all, so fingers crossed it is gone for good.  At the 12 month mark I am happy to say that the nerve pain seems to still be gone and I do hope it stays that way.  I’ve had a couple days when I’ve had nerve pain in my left arm, but it usually is temporary and short-lived.  Doctors often say that you have pain, tingling, and some numbness when nerves are trying to rewire themselves, so that’s what I’m hoping for.

So there is my update on that.  All in all I am happy where I am at in recovery.  HSCT has given me a second chance at life and I’m able to do so many things that I wasn’t able to do before.  I can mostly live my life like I did pre-MS. They say improvements can continue up to 2 years afterwards and many people have seen improvements way after that.  It’s really hard to say what will happen in the future, the body is amazing and the brain is even more amazing when it comes to healing itself.  Plus I think everyone is hopeful that someday there will be myelin repair drugs that will repair the damage that is done.  But considering where I was in the past and how bad things were at one point in time, I’m happy with where I am now.  Of course I’d like to be back to where I was pre-MS when I could do whatever I wanted and have no limitations, but you can’t change the past and there is no reason to dwell on things that are lost, you just gotta move on, embrace the change and live life to the fullest.  You gotta have a positive attitude and yet be realistic, there is a chance this fucking MS could come back in the future and I don’t take one day of my life for granted, because I know just how fast that all can change.  I got a second chance at life and I’m making the most of it.

So now let’s discuss blood work numbers.  I opted to display them in table form, so you could see the important numbers and how they have changed since I’ve been home.  And then I also listed some blood work numbers from before I was diagnosed with MS and before I had any MS symptoms so you could see what they looked like prior to HSCT and then I also listed the numbers from my pre-testing in Russia and then what my numbers were in my final blood work done before leaving. So I have the dates listed for when the blood work was done and then also color coded it as well for easier reading.  One color is pre-MS, next is when I was in Russia and then finally the last color is everything since being home.  Normal averages for each of those categories is listed at the top of the graph in parenthesis. Here’s the table:

Date WBC

(3.8-11.0)

RBC

(3.5-5.5)

Hemo-globin

(11.2-15.7)

Platelets

(150-420)

Neutro-phils

(1.9-8.0)

Lympho-cytes

(1.4-4.8)

5/21/2014 5.8 4.28 13.7 187 4.33 1.10
11/27/2014 7.0 4.20 13.0 235 5.03 1.55
2/19/2015 6.2 4.59 14.3 229 4.65 1.10
4/26/2016

(Arrival)

6.02 4.3 13.5 180 1.50
5/24/2016 (Leaving) 7.46 3.4 11.1 338 0.50
6/1/2016

(Day +21)

4.0 3.58 11.6 377 3.05 0.40
6/5/2016

(Day +25)

5.6 3.55 11.7 335 4.33 0.47
6/7/2016

(Day +27)

5.9 3.83 12.3 378 4.61 0.51
6/21/2016

(Day +41)

6.0 3.80 12.4 200 4.83 0.64
7/21/2016

(Day +71)

4.2 4.04 12.9 214 3.15 0.58
8/18/2016

(Day +99)

5.1 4.08 13.2 199 3.93 0.61
10/2/2016

(Day +144)

4.88 4.32 13.4 184 4.07 0.43
11/9/2016

(Day +182)

5.21 4.43 14.0 195 3.98 0.65
3/3/2017

(Day +296)

3.5 4.25 13.1 142 2.21 0.81
5/24/2017

(Day +378)

3.45 4.35 13.7 163 2.37 0.78

So as you can see my numbers have been all over the place since being home and that is completely normal.  Numbers can take up to 2 years to get back to normal and even then they fluctuate so much person to person.  Some people are always on the low end of the charts even when healthy, others on the high end, a lot depends on genetics.  So basically at the one year mark my lymphocytes are finally in a normal range for some testing facilities, some say 0.70 is the low end of the range.  Even pre-MS my numbers there were low, so it’s just how it is, one of my daughters is the same way.  So really this table is just to show how my numbers have been throughout everything, everyone is different.  My WBC numbers are still a bit low, but now that summer is here and people in general tend to be more healthy, I’m sure my counts are a bit better.  Everyone is happy with my numbers and that’s what matters.

So one year out, what’s my thoughts on the whole journey.  I’m still happy with my decision to have it done, it truly was life-changing for me, but wow recovery was rough at times.  I did luck out on the side-effects and didn’t have a whole lot of them compared to some people.  The one real issue I am still dealing with at this moment is hormone levels, my body is basically in peri-menopause and my hormones are all out of whack, literally.  I was having periods on a normal schedule, around every 28 days, then skipped a month and now am having them around every 2 weeks for the last couple months.  I could go have blood work done to see if I am indeed going through menopause, but many younger people have done that and the blood test shows that they were indeed in full menopause, and then after a year or two, they are back to normal periods.  So really I’m just riding it out and seeing how it all goes.  Sucks, but such is life.

Now onto the oh so important topic of hair.  Mine is a mess, a complete and utter crazy horrendous mess.  A lot of people trim off a few inches to get rid of the chemo curls. I’ve just let mine grow out so it will get long enough that I can pull back, but at times it is ridiculous. It’s like a perm gone wrong.  It ranges in length from 4-6″ depending on where it is on my head, I could rock a tiny pony tail on the top of my head if I would chose too. Now my eyebrows and eyelashes are still struggling to come back, they are sparser than before and they fall out fairly easily.  Hopefully that stops happening, but considering everything I went through, I can live with that.  So here is what my hair currently looks like at the 1 year mark.

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And then for fun, let’s do a slideshow of hair pictures throughout the first year.

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So onto the part of my post that I do every update, where I discuss my monthly goals of exercise, yoga, meditation and diet.  Most of which I completely fail at every month, but I can admit that, so it’s all good.  As for exercise, I really don’t do much real exercise in general.  I walk 7-10 miles a day at work, which is normally 4-5 days a week and do a fair bit of heavy lifting there as well.  My days off I keep busy in the garden, dealing with firewood, playing with the kids, and other things that keep me busy.  I do try to ensure that I get in at least a few miles of walking every single day, which I normally accomplish.  I will say that I do feel much better when I do a fair bit of walking or actual hard work every day, I’ve always thrived on that and especially after I started working, it really helped with my recovery.  A lot of my lingering issues really cleared up when I started being a lot more active.

Yoga and meditation, yeah not really happening much.  I just don’t have the energy for yoga after work, I work later into the evening, so when I get home I just want to shower and chill until I go to bed. And then in the morning, it really does take me a couple hours in the morning to get fully functional, so doing yoga bright and early really doesn’t work for me.  And most of the time, it’s one of my kids that is up before me, and attempting to do yoga with my youngest would just fail miserably, literally she would be climbing me the entire time. So really the mornings and evenings are either me time or family time.  When I do get the rare moments of time to myself, I do just enjoy sitting outside, breathing in the fresh air and just taking it all in. In my younger days I spent a ton of time in the woods working various jobs, and a great deal of the time I was working by myself, so my happy place is just being outside enjoying nature. And the meditation is still a complete and utter fail, I really just cannot grasp how people do it.  I try and fail and try and fail time after time.  I honestly have an incredibly short attention span and it’s hard for me to focus on one thing for long periods of time, so no matter what type of meditation I attempt to do, my mind constantly wanders. But just being alone outside for a while I think works as meditation for me, gives me time to just think about nothing and just enjoy nature. Before I go to sleep each night I do try to do some breathing exercises and also a bit of meditation, normally I fall asleep during my attempte meditation, so I guess perhaps that could be considered a success.  Just really not my thing I guess, but I do plan to keep at it.

Diet….another fail for me.  Eating healthy may seem super easy, but really it isn’t so easy when you have a super busy schedule.  I know, I know I am full of excuses, but life is crazy sometimes. I’m about 50-50 on healthy eating right now.  It is something that I do really want to do better at in this upcoming year, and as I’ve mentioned in the past I do follow a modified paleo diet.  I honestly feel tons better when I eat no gluten, no added sugar and avoid processed foods, but some days I break down and give in and I’m okay with that. I do plan to be a lot more strict with following a paleo type diet in the future as one of my children has some medical issues and that type of diet would benefit her, so in the future my diet will be better.  It also is really difficult to eat a healthy diet that is high in veggies when you live in an area like I do.  Most stores do not sell a wide variety of veggies in general, finding organic in most things is damn near impossible and it’s so hit and miss on what stores will actually have when I go shopping.  Normally I end up with about half the stuff I wanted after a shopping trip, because people here just do not eat much in the way of veggies.  I do grow a large garden, but that takes time to grow, so not getting anything from that at the moment.  So diet is really my main goal for the future.  I know healthy eating is important for gut health, I know all about the gut connection to the blood-brain barrier. Plus eating healthier makes me feel better.

Many people with MS take supplements and I am no exception.  I don’t take as much as I did pre-HSCT, but I do still take some regularly and some when I feel I need to supplement them. I do still take 5000 iu of Vitamin D in the summer months and 10,000iu in the winter months.  I take less in the summer because I actually go out in the sun for a while each day, so get it naturally.  I do take an algae based supplement for the B vitamins.  And those are really the 2 supplements I take regularly.  Depending on how I feel and what I will be doing I also do occasionally supplement with magnesium, calcium, fish oil, vitamin C and multi-vitamins.  A lot depends on my diet and plan for the day. I don’t like taking tons of supplements as I prefer to get stuff naturally from food items. I have looked into biotin but haven’t decided what I am doing with that yet. I don’t take any other medications and the only one I took regularly for a while after returning home was the acyclovir, which I stopped after around 6 weeks.  Doctors are so up in the air on what you should take afterwards, my local doctors recommend taking nothing for their cancer patients that have undergone the same procedure, their research shows the meds really don’t prevent anything and do more harm than good. Dr. F at the time recommended 1 month of acyclovir and that was it, other doctors recommend bactrim and acyclovir for 6 months to a year, so that is so individual.  Most people however get a lot more improvements and feel much better after stopping those meds just because they do have so many side-effects that come with them.

As for other things in my life, I am just living life one day at a time and not taking anything for granted. I went back to work around the 9 month mark, it hasn’t been too bad.  My free time is spent with my family.  I am growing a large garden this year, so taking care of that has been a challenge.  Then we have cut down several trees on our property, so been busy with firewood as well.  I absolutely love spending time outdoors and am so thrilled to be able to actually garden and do all this outdoorsy stuff this year, as I couldn’t go it last year because of my new immune system.

So in the end I am so happy to be where I am today.  My MS has been halted, my EDSS score is zero, many of my lesions disappeared or are getting smaller and I’ve had so many amazing improvements.  Am I where I was pre-MS?  No, and I most likely never will be.  But at the same time, it’s hard to remember how life was then, I’ve gotten used to my body and all it’s quirks. I am well aware of how harsh HSCT is on the body and I know there are future risks down the road because of the chemo and there is that chance that one day the MS itself could come back.  But you know what, it still was worth it, because without HSCT I’d be developing more lesions and getting worse and worse.  And since my MS seemed to love my C-Spine, another lesion or two in certain areas in my spine would have completely paralyzed me, messed with my breathing or just flat out killed me. I’ve had people ask me how I’d feel if the treatment ends up failing for me and if the MS comes back in a couple years, and I still wouldn’t regret having it done, having existing damage go away and not get worse for a couple years, I mean that is unheard of on any of the medications on the market. The MS medications have just as many risks of killing you in the future as the chemo does, so any way you look at it, if you have an autoimmune disease in general you just get fucked over in life. And in the future perhaps they will come up with a medication that actually works to regrow the myelin, and that would be able to repair existing damage, which would be great.

So to end this post, I just want to say that I am so happy with where I am today and without undergoing HSCT in Russia and under the amazing care of Dr. Fedorenko I’d be in bad shape now.  It was life changing.  I will continue to post updates on my blog here, but I don’t know how frequently I will post, it will most likely be every couple months now just because I’ve basically plateued on my recovery, so I don’t have much to really discuss anymore.  But at the same time I do want to continue to do updates since so many people just stop the updates after they get home from treatment and I think people should be able to see how people are doing in the future.  So here’s to another year of MS free life!

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About Cat

I'm an outdoorsy gal, wife, mom of 2 and MS Warrior. I underwent HSCT in Russia in April/May 2016 to halt my MS and documented my entire journey while I was there in my blog and am now continuing to blog through my recovery.
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