Join us for an interview with Ray and discover how he has been able to manage through his diagnosis with Multiple Sclerosis. This is Ray’s Healthful StoryTM. Please note that the video may only play in landscape mode when viewed on a mobile device.
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Navigate Ray’s Journey with MS
00:09 As much as you share you never know what thing that you share will hit a nerve with someone and give someone that motivation to explore an avenue that might be helpful for them
00:24 My name is Ray and I’m originally from California but I’ve lived in Colorado, Illinois, Ohio and now the great state of New York
00:34 I work in healthcare finance so I have a lot more hands-on approach than most people in terms of understanding the billing process and insurance and the potential pitfalls that in many cases result in people having missed treatment or the opportunity to get treatment is something that they lose out on because they don’t know that they can afford it or they don’t know what options are available or their insurance simply won’t pay for certain things unless the right hoops are jumped through
01:24 I received my diagnosis in 2019
01:34 I was at a baseball game that was out in the heat a little and towards the end of it I felt increasing bladder urgency way beyond the amount of liquid that I’d had
01:54 I felt kind of wobbly so that I would get up and then I was a little bit unsure of my footing and so I walked into the restroom and that was really kind of unpleasant. When it was time to go home the walk to the car that was maybe a mile each progressive step felt like I was getting a little bit worse. I was getting hotter and I was getting more stumbly and I needed to hold on to the wall just help myself along
02:34 My feet didn’t want to pick up and so especially my left foot I noticed that as I tried to lift it just to walk foot in front of the other it just didn’t want to lift and I was almost dragging it behind me
03:22 Every day after that it was almost as if it fixed itself but then it just didn’t
03:30 A few days later our air conditioning went out and in the heat it was really unpleasant so we bought a portable air conditioner just to hold us over for a couple of days until the repairman would come out and I picked up the portable air conditioner and I’m fairly strong or at least I have been, I picked this thing up and it was pretty heavy, easily 80 or 100 pounds and I felt like my back was again just kind of going out that it would give up and I got the air conditioner into the shopping cart and I got it into the car but after that I felt like my legs just weren’t working quite right and I was a little bit wobbly again but then it just went away
04:19 The next day or shortly thereafter we went to the movies and I started to feel weird and my feet started to feel weird and so I’d start to get this little tingling in the bottom of my feet and then by the time the movie was over my feet were starting to actually go numb and so on the way home I decided this is something that doesn’t just get fixed with the chiropractor visits and it’s an ongoing thing this is something that actually needs an ER visit
06:04 And so I had a CT scan done and I had a batch of MRIs done at that time on my brain and cervical to make sure that there was nothing absolutely life-threatening that was happening but they didn’t have any good answers and the doctor said at that point we don’t know what the answer is and we’re going to get a neurologist involved
07:09 So I did go ahead and get admitted and they continued with a whole battery of blood tests and more MRIs
07:48 They also went ahead and did the lumbar puncture to get the spinal tap for a definitive diagnosis from lab tests
07:57 So this entire process actually took a a couple of days
08:44 I received my diagnosis and it was that Tuesday later on in the day that I got started with the IV steroids – a pretty hefty dose of steroids
09:25 I really didn’t notice any significant improvement that day or the next day when I also had an IV treatment or even the day after that with that infusion treatment. It was probably the fifth day of consecutive for infusions that I really started noticing an improvement to the major symptoms that I had and by that time before it actually got better I had essentially no feeling in my feet and very little feeling at all in my legs all the way up to my thighs
10:54 After the third day of IV infusions I was released and went home. They gave me a walker and at that point I lived in a two-story home with the bedroom on the second floor
11:07 I was able to walk just fine up and down the stairs but I had to look more carefully than I was used to just to make sure that my feet were actually where I thought they were because they would respond but I didn’t get the tactile feedback from exactly when the foot was on the stair or not so at that point
11:28 When I was being released they also had a physical therapy consult with someone to make sure that I was able to go up and down the stairs properly in the controlled setting of the hospital and they assisted my wife with some instructions for how to handle helping me
12:21 The outpatient infusions were slow but the whole process is slow even in the best of cases
12:44 Most of the people that were there in the infusion clinic there with me getting infusions were there for something entirely different, many of them with end stage renal disease or severe cancer
13:36 I started working from home for a few days as I transitioned back into daily life but I didn’t really have all the answers at that point either
13:46 I had the diagnosis and I had the treatment done, but I had no idea how much of my lost sensation that I would get back and I had no idea whether I would be going to need to continue to use a walker for a long period of time or not
15:50 Coming home I was able to adjust pretty well and work understood very easily that I was going to have some limitations that I didn’t even know what they would be for quite some time and I couldn’t know I was able to work from home for that week and then go back into the office the following week and that all worked out pretty well
16:31 I don’t think anybody that I had direct contact with in my work really knew very much about the disease because most people wouldn’t even in health care financial because the diseases that we deal with on a regular basis are all just on paper and not necessarily something that a person would have personal exposure to the patient
17:11So i got used to a little set of stories and explaining MS is essentially an attack on an electrical cord if that electrical cord is your nerve the sheath around it the insulation there is the myelin and what happens if you have that electrical cord where you get a little cut or you melt off some of that sheath around it you have a short and that’s what happens with MS and that’s something that people generally seem to understand
18:33 So it was probably a month and a half before I actually got my neurologist follow-up to start with disease modifying therapy and so during that time of course I had a lot of questions
18:54 I don’t think I got as many answers from that initial consult as I really wanted but I’ve been able to read a lot online to sort of fill in those blanks and now looking back on that I would have really have benefited much earlier from reading through the MS subreddit and getting the benefit of the wisdom of people that have been with it for years or decades to pass on little tips and tricks and things that I might relate to and that sort of thing
20:17 Without sleep your body will get worse faster
20:23 Additionally diet and exercise are very important and so I was able to get those tidbits from people
20:35 One of the things that I actually started doing on a regular basis was I have a green juice. I got a juicer actually a few months before my
diagnosis
21:07 And so i have this green juice that smells like a lawn mower and it is primarily cucumbers but also kale and spinach and a little bit of apple a little bit of kiwi and I’ve been having that at least four days a week but almost every day for at this point more than two years
21:44 I’m sure that some of the inclusion of the fresh kale and fresh spinach means some other vitamins that I’m getting on a regular basis that maybe I’m not absorbing very well otherwise. It might be better but I can’t really say for sure
22:10 I have been pushing hydration quite a bit. I usually have between three and five liters of fluid a day
22:28 I’ll have easily two liters before breakfast on a lot of days
23:43 I also start the day with a high protein meal. It’s egg whites and cheese
23:51 I use a Starfrite pan from Canada and it’s a special kind of nonstick so I just put the egg the cheese in there in the pan no oil just the cheese in the pan shredded cheese and let that start to melt a little bit then egg whites and as that starts to cook I fold it over to do an omelet out of it but it’s a cheese on the outside omelet.
24:45 When I was on an oral pill twice daily Tecfidera which has a risk of some digestive upset and some flushing I would avoid the flushing entirely and avoid the worst of the digestive upset by having it after that eggs and cheese meal which is heavier and it means that it forces the digestion to slow down a little bit
25:26 The fatigue from Tecfidera was pretty significant at first that I ended up a few days off work because of that both at the initial starter dose and again when I ramped up in a few weeks to the full dose which was twice the starter dose and I imagine that’s probably similar to how the reaction is on average for Vumerity because they’re almost the same medication
25:55 Tecfedera is now available in the generic which meant a problem for me because I was on the manufacturer’s co-pay assistance with that
26:09 If I went with the generic I’d have no copay assistance but once I navigated that by having the doctor prescribe it as dispense as written my insurance company got wise and said hey we’re going to tack on this penalty amount for getting the brand name when the generic is available so they charged extra, though it didn’t end up costing me any extra because it went to the copay assistance program
26:41 So there were a few months like that it it showed up as a roughly $2,600 per month penalty amount for getting the brand name
26:53 The manufacturer got wise to how much money that was costing them and they said hey instead of having this copay assistance unlimited we’re now changing the rules on you and starting in like three weeks it’s gonna be capped at twenty thousand dollars per year which on the surface would be perfectly fine for most people that have insurance even if they’re on an 80 20 plan. The cost of the medication after insurance does their contractual adjustment is going to be low enough that even twenty percent of that twelve fills a year is probably not over twenty thousand dollars
27:43 But my situation on a high deductible plan at that point where my deductible and out of pocket max were six thousand seven hundred fifty dollars a year I would hit that and then every month there was still the twenty six hundred dollar penalty and I just did the math and said well something’s got to change because I’m going to run out of copay assistance if I stay on the brand name and I’m going to have no copay assistance at all if I go to the generic and so either way I have to do something different or I’m going to have to pay $6,750 a year or more in out-of-pocket costs just for my maintenance medication
28:31 So I ended up switching just about a month ago to Ocrevus, a twice yearly infusion and that I expect is going to kind of solve that problem as well
28:46 I already hit my deductible and out of pocket maximum for the year for this year so my first set of infusions on that were totally covered to begin with. The pre-insurance cost for that the charges amount would be eighty six thousand dollars every six months
29:05 With insurance, the contracted amount would be thirty-four thousand every six months and that’s one of the big disparities in our health care system that we continue to perpetuate this difference between what one person pays and what the next person pays for the same service and the charges are not transparent because if you start with eighty six thousand dollars and then do a little shell game and you’re okay with actually receiving $34,000, why is that not the price up front and so that is something that I think is going to take a long time for our health care system to address in this country
31:29 I was able to get the appointment with my neurologist scheduled far enough out that I could wait for the four months between when I found out and when I would start on Ocrevus and not everybody’s able to do that
31:45 I’ve read online stories on reddit where people find out when it has already happened and they get the bill and at that point not only can they not fix it that month but it’s going to be that three or four months before a good solution can happen and for many people that means going without the disease-modifying therapy for those three or four months because they simply can’t afford it
36:30 Overall with Tecfidera I had only occasional flushing, the very mild that on occasions I would take some aspirin to help with that but I really didn’t need to treat it in general. On the occasions I had flushing it was when I failed to have the medicine at the normal time with my eggs to help kind of coat the stomach and so maybe I just had a light breakfast or I had it a little bit late and so it had an unprotected stomach to it
37:12 The digestive upset was basically every day for the time that I was on Tecfidera. The fatigue would come and go so some days were better than others in terms of fatigue. I’m not certain how much of that was just the drug and how much of that was MS in general and how much of that was maybe something unrelated entirely
37:39 Since I’ve been off of Tecfidera, I’ve noticed much less fatigue overall as well as having maybe more feeling of being able to do things physically and I’m differentiating that from fatigue because it’s one thing to just be tired and not want to go up the stairs but a completely other thing where going up the stairs feels physically difficult not from being tired just because of the exertion of it
38:16 So both of those were addressed by stopping the Tecfidera
38:23 And I’ve been doing exercise in a home gym situation lifting weights. We got a dumbbell set this year so that we can do social distancing but still have the regular exercise and I’ve been able to level up with the weights pretty consistently but after I got off the Tecfidera. I= feel like that that is speeding up and I’m getting better results faster so that may just be a momentum thing or it may be in my head or it may actually be the situation of the drug was kind of getting in the way, I don’t know for sure, but I like the results no matter what the situation was on that
39:19 The first thing in the morning I exercise just to get the blood flow but also periodically throughout the day because I’m working at home and I’m in my basement if I get a little bit of the afternoon doldrums the kind of tired and faded feeling lacking some attention span not having the mental clarity any of those things I’ll get up lift weights for five minutes get that blood moving again and get that mental clarity back and it comes very very quickly
39:50 I’m really surprised at how effective that is just to get up and get moving a little bit to help the day go better
40:39 I do know that the sleep and the sleep quality make a huge difference in not having brain fog and being able to have continued attention span throughout the day
41:03 For the most part I don’t on a daily basis use a cane a walker or any assistance like that
41:12 I do have regular physical therapy I’ve gone to for a couple of months and I now know some of the exercises that will continue my process to improve my range of motion and abilities in my lower limbs in moving just going forward
41:37 I think that it’s going to get better, that it’s going to continue to get better and if nothing else I can stop degeneration and I know some of that is from atrophy from allowing it to get worse and not really push my boundaries and so in that realm one thing that I would say is be sure to ask about physical therapy because it may be something that the neurologist or the primary care physician doesn’t proactively recommend but it could still be something that they order and insurance will pay for it and it’ll help
42:29 About Ocrevus, the thing that I noticed most about that first infusion was actually the steroid buzz that night because they gave me the pregame cocktail of some Benadryl and some cortisone and it was IV cortisone so it hits a little bit differently from the pills but I didn’t really feel much at that time and I didn’t have any adverse reaction to the infusion at all and I don’t think that there is anything that I felt from that infusion or the second dosage that I could say yes I feel differently because of the Ocrevus but I do know that the steroid treatment meant that I had interrupted sleep that night and so I really felt poorly the next day from that lack of sleep and I can say definitively that it was that lack of quality sleep that night that was why I felt badly the next day
43:32 For the second Ocrevus infusion treatment I addressed that by having the doxylamine succinate, the Nyquil pill basically and was able to kind of overcome the momentum of the steroid by medicating the other way and I had quality sleep and felt fine the next day
47:28 My wife is very understanding not only that my needs are different but also that I may not be able to fully communicate those needs at times that if I have a situation of intense fatigue that comes out of nowhere I get over hot or something like that and I’m just done for the day I may not be able to clearly and concisely say that and she’s able to pick up those visual cues to see that maybe I’m a little stumbly and I might need the cane or I might need to go sit down for a little bit or go be in the air conditioning or or something that it may be better just to get everything assembled for me as we go out the door in the morning because I’m used to how long things take before MS and what my normal process is in getting ready to go out the door. It’s very different now the amount of time it takes me to go up and down the stairs or to go through my mental checklist of do I
have my wallet do you have my keys do I have my watch do I have my sunglasses do I have the receipts for the things that I want to return do I have my shopping list prepared
49:28 So her being cognizant of some of my limitations and some of what I’m not able to adequately communicate is very very helpful
50:10I like to cook and my knife skills are noticeably impacted by my dexterity. At this point I have some limited paresthesia paresthesia in both hands, some of the pins and needles feeling and so I don’t have the same sensory feedback if I without looking reach into my pocket to grab something out I may not feel exactly that set of keys or that credit card. I may not feel a card at all
56:07 Looking back I’ve been able to identify things that almost certainly were MS 10 years before I got the diagnosis and even 15 years before the diagnosis that were probably it being active but at a lesser degree where it was not really diagnosable and not the same from one day to the next
56:33 I might randomly have a digestive issue that means that I have something that seems to not agree with me that day but that same thing causes no problems at all the following week which tells me overall because this happened many many times that it wasn’t that one thing it wasn’t that other thing. It was that something goofy was going on with my digestion that was not related to the specific thing that I was eating
57:11 Additionally I had some negative outcomes from being exposed to prolonged heat and I would get intensely fatigued after baseball games just being in the heat and I didn’t put that together with the MS until years later after the diagnosis but looking back I can say this is exactly why after being out in the heat for that baseball game I really felt poorly for the rest of that day
59:08 The MRI records show a vast number of old lesions that support that that say hey there was a thing at some point in the past and it happened many many times it probably happened over a number of years so chances are these old lesions are from things from events that happen that could have been identified as a MS flareup a long time before if all of the pieces were put together properly but they just didn’t happen that way
59:48 I had an event where I had some paresthesia in my left hand and they did the EMG (electromyography) test for the nerves in my arm and everything seemed absolutely normal probably because the issue with my hand was actually in my spinal cord and they didn’t know to look there for the issue and so it didn’t show up when they tested the nerves from my shoulder to my hand. Everything tested fine and I didn’t have other symptoms that they could absolutely definitively say hey this is the differential for MS as opposed to something else
60:28 So it just didn’t happen
62:10 During the day, I do to manage take a breath completely stop everything have a quiet five minutes in the middle of the day. I close my eyes and just be for a moment. Five minutes isn’t going to really interrupt the work day but that five minutes of clarity could make the rest of the work day much more effective