Ray's Healthful Journey through MS

Introduction and Background

00:09 — Why Sharing His Story Matters

“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 — Where Ray Is From

“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 — Working in Healthcare Finance

“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.”

Symptoms and Early Warning Signs

01:24 — Diagnosis Year

“I received my diagnosis in 2019.”

01:34 — First Symptoms at a Baseball Game

“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 — Difficulty Walking

“I felt kind of wobbly, so that I would get up and then I was a little bit unsure of my footing. 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 to help myself along.”

02:34 — Trouble Lifting His Foot

“My feet didn’t want to pick up. 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 — Symptoms That Seemed to Come and Go

“Every day after that, it was almost as if it fixed itself, but then it just didn’t.”

03:30 — Another Episode During a Heat Wave

“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.

“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.

“I felt like my back was again just kind of going out, that it would give up. 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 — Numbness and Tingling

“The next day, or shortly thereafter, we went to the movies, and I started to feel weird, and my feet started to feel weird.

“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.

“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.”

Diagnosis and Hospitalization

06:04 — Initial Testing

“I had a CT scan done, and I had a batch of MRIs done at that time on my brain and cervical [spine], 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 — Hospital Admission

“I did go ahead and get admitted, and they continued with a whole battery of blood tests and more MRIs.”

07:48 — Spinal Tap

“They also went ahead and did the lumbar puncture [spinal tap] to get the spinal tap for a definitive diagnosis from lab tests.”

07:57 — Waiting for Answers

“This entire process actually took a couple of days.”

08:44 — Diagnosis and Initial Treatment

“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 — Gradual Improvement

“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 infusions that I really started noticing an improvement to the major symptoms that I had.

“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 — Leaving the Hospital

“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 — Learning to Navigate Stairs

“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 [sense of touch] from exactly when the foot was on the stair or not.”

11:28 — Physical Therapy Before Discharge

“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.

“They assisted my wife with some instructions for how to handle helping me.”

12:21 — Outpatient Infusions

“The outpatient infusions were slow, but the whole process is slow, even in the best of cases.”

12:44 — Other Patients at the Infusion Clinic

“Most of the people that were there in the infusion clinic with me getting infusions were there for something entirely different, many of them with end-stage renal disease [advanced kidney disease] or severe cancer.”

Returning to Work and Understanding MS

13:36 — Transitioning Back to Daily Life

“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 — Uncertainty About Recovery

“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 — Support from His Employer

“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.

“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 — Others’ Limited Understanding of MS

“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 healthcare finance.

“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.”

17:11 — Explaining MS to Other People

“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 [the protective covering around nerve fibers].

“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.”

Learning from Other People with MS

18:33 — Waiting for Neurology Follow-Up

“It was probably a month and a half before I actually got my neurologist follow-up to start with disease-modifying therapy [treatment intended to reduce MS disease activity].

“During that time, of course, I had a lot of questions.”

18:54 — Finding Answers Through the MS Community

“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 fill in those blanks.

“Now looking back on that, I would have really 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.”

Lifestyle, Diet, and Hydration

20:17 — Importance of Sleep

“Without sleep, your body will get worse faster.”

20:23 — Diet and Exercise

“Additionally, diet and exercise are very important, and so I was able to get those tidbits from people.”

20:35 — Developing a Green Juice Routine

“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 — What Goes Into His Green Juice

“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.

“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 — Possible Nutritional Benefits

“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 — Staying Hydrated

“I have been pushing hydration quite a bit. I usually have between three and five liters of fluid a day.”

22:28 — Morning Hydration

“I’ll have easily two liters before breakfast on a lot of days.”

23:43 — Starting the Day with Protein

“I also start the day with a high-protein meal. It’s egg whites and cheese.”

23:51 — His Breakfast Routine

“I use a Starfrit pan from Canada, and it’s a special kind of nonstick.

“I just put 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.”

Medical Treatment, Medication, and Insurance Challenges

24:45 — Managing Tecfidera Side Effects Through Food

“When I was on an oral pill twice daily, Tecfidera [an MS disease-modifying medication], which has a risk of some digestive upset and some flushing [warmth and redness of the skin], 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 — Fatigue from Tecfidera

“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 [another MS medication], because they’re almost the same medication.”

25:55 — Problems with Generic Medication and Copay Assistance

“Tecfidera is now available in the generic, which meant a problem for me because I was on the manufacturer’s copay assistance with that.”

26:09 — Insurance Penalties for Brand-Name Medication

“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 — A $2,600 Monthly Penalty

“There were a few months like that. It showed up as a roughly $2,600 per month penalty amount for getting the brand name.”

26:53 — Changes to Manufacturer Assistance

“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 $20,000 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 [insurance pays 80%, patient pays 20%].

“The cost of the medication after insurance does their contractual adjustment is going to be low enough that even 20% of that, 12 fills a year, is probably not over $20,000.”

27:43 — The Financial Pressure of Staying on Treatment

“But my situation on a high-deductible plan at that point, where my deductible and out-of-pocket max were $6,750 a year, I would hit that, and then every month there was still the $2,600 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.’

“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 — Switching to Ocrevus

“I ended up switching just about a month ago to Ocrevus [an MS disease-modifying treatment], a twice-yearly infusion, and that I expect is going to solve that problem as well.”

28:46 — The Cost of Infusion Treatment

“I already hit my deductible and out-of-pocket maximum for the 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 $86,000 every six months.”

29:05 — Healthcare Price Transparency

“With insurance, the contracted amount would be $34,000 every six months.

“And that’s one of the big disparities in our healthcare 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 $86,000 and then do a little shell game and you’re okay with actually receiving $34,000, why is that not the price up front?

“That is something that I think is going to take a long time for our healthcare system to address in this country.”

31:29 — Having Time to Plan a Treatment Change

“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 — When Patients Cannot Afford Their Medication

“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.”

Medication Side Effects and Physical Recovery

36:30 — Flushing While Taking Tecfidera

“Overall, with Tecfidera I had only occasional flushing, 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 coat the stomach.

“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 — Digestive Problems and Fatigue

“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 — Feeling Better After Stopping Tecfidera

“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 — Improvements After Changing Medication

“Both of those were addressed by stopping the Tecfidera.”

38:23 — Building Strength Through Exercise

“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.

“I’ve been able to level up with the weights pretty consistently, but after I got off the Tecfidera, I feel like that is speeding up and I’m getting better results faster.

“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 getting in the way.

“I don’t know for sure, but I like the results no matter what the situation was on that.”

Exercise, Mental Clarity, and Physical Therapy

39:19 — Short Exercise Breaks During the Workday

“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 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 quickly.”

39:50 — The Benefits of Movement

“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 — Sleep and Brain Fog

“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 — Walking Without Assistance

“For the most part, I don’t on a daily basis use a cane, a walker, or any assistance like that.”

41:12 — Physical Therapy

“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 — Encouraging Others to Ask About Physical Therapy

“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 [muscle weakening or loss] 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.”

Experience with Ocrevus Infusions

42:29 — First Ocrevus Infusion

“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 — Managing Sleep After the Second Infusion

“For the second Ocrevus infusion treatment, I addressed that by having the doxylamine succinate [an antihistamine sometimes used as a sleep aid], the NyQuil pill basically.

“And was able to overcome the momentum of the steroid by medicating the other way, and I had quality sleep and felt fine the next day.”

Family Support and Everyday Challenges

47:28 — His Wife’s Understanding and Support

“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.

“If I have a situation of intense fatigue that comes out of nowhere, I get overheated 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.

“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 I 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 — The Importance of Having an Understanding Partner

“Her being cognizant of some of my limitations and some of what I’m not able to adequately communicate is very helpful.”

50:10 — How MS Affects Cooking and Hand Dexterity

“I like to cook, and my knife skills are noticeably impacted by my dexterity.

“At this point, I have some limited paresthesia [tingling or abnormal sensations] 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.”

Looking Back at Symptoms Before Diagnosis

56:07 — Recognizing Earlier Signs of MS

“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 — Unexplained Digestive Symptoms

“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 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 — Heat Sensitivity Before Diagnosis

“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 — Old Lesions Found on MRI

“The MRI records show a vast number of old lesions [areas of damage visible on MRI] that support that, that say, ‘Hey, there was a thing at some point in the past, and it happened many times.’

“It probably happened over a number of years.

“So chances are these old lesions are from things, from events that happened that could have been identified as an MS flare-up a long time before if all of the pieces were put together properly.

“But they just didn’t happen that way.”

59:48 — Earlier Nerve Testing That Did Not Reveal MS

“I had an event where I had some paresthesia in my left hand, and they did the EMG [electromyography, a test of muscle and nerve function] 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 — Why Diagnosis Took So Long

“So it just didn’t happen.”

Personal Aspirations and Advice

62:10 — Taking Five Minutes to Reset

“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 workday, but that five minutes of clarity could make the rest of the workday much more effective.”