Ex-CEO Navigating Life with MS - Now What?

By mwrightorlando

3 min read

Hello all!

At the age of 19, began to exhibit symptoms of fatigue, night sweats, pain, insomnia, and low-grade fevers.

These diseases didn't stop me

Was diagnosed then with chronic fatigue, fibromyalgia, Cytomegalovirus, and Epstein Barr. None of those diseases stopped me, however, it made tasks much more difficult. Was still able to found and run 3 companies, as well as a non-profit children's charity that taught kids grade K-5 the importance of giving to others through hands-on community service projects that they planned and implemented, then our charity funded for supplies, transportation, and a stipend for teachers in need of class supplies.

Had to go on disability

Fast forward 20 years, began to have balance issues, the MS hug began, pain got increasingly worse and was in a constant state of fatigue, along with some other issues. Had to go on disability then because of the many issues. I traveled in Europe and Asia, mostly spending time resting, going out and being social when able, taking in new sights when able.

An MRI finally confirmed MS

After 4 years of guessing, partly because a spinal stimulator that had been implanted from football and car accidents, precluded me from getting an MRI. Even though the spinal tap showed positive for MS, they could not confirm it until a year ago when an MRI was able to be taken showing lesions and Dawson's Fingers formation.

Looking back, had been having flares, without knowing what they were, at a rate of about 1 every year and a half, for the past 6-10 years.

Scared the disease may be progressing

Was a motivational speaker for years, for many organizations, now in a relapse that has lasted over 2 1/2 months, taken Solu Medrol with no relief, and just am feeling useless and scared that the disease may be progressing - lacking the hope and motivation that I spoke of to so many.

Between relapses for the last two year, have been eating very healthy, especially foods that hold natural anti-inflammatory properties, worked out 3-4 times a week with weights and kept up a vigorous aerobic level on the other 3 days. I pushed and fought for health through clean living, took no medications (except for sleep), and was starting to feel a bit better.

Now with this long relapse, the Dr. feels I should go on Ocrevus to slow the disease and help with flare up frequencies and length.

Pain, fatigue, and loneliess

Have so many great business ideas that are unable to be executed from bed, feel lonely as I backed away from friends to save them from my having to constantly respond with a no to invites, then also hated having conversations from a place of such pain and fatigue. My ex-wife and 4-year-old daughter live in Europe so getting to see them is very limited.

Have always lived life on my terms, never searched for who I was in love, always created what I wanted to be and give to others through mental focus, hard work, and creativity. My creativity and capacity to love someone has no home, for now.

Looking for help and support

Was just wondering for those of you that have Relapsing Remitting MS, then it progressed into further stages, was it a progressive step or did you just not recover from a relapse that indicated the disease's progression?

Has anybody tried Ocrevus? Did it help? Any bad side effects?

Lastly, does anybody know of any phone forums where people can talk to each other about emotions, frustrations, successes, life in general with MS? Am a great listener and would love to know more about your personal stories, struggles, triumphs.

Appreciate any answers... Wishing you all the best on your journey with MS. May we all be grateful for what we are still able to do and enjoy... Thank you for any help, advice, communication, etc.

All the best,
Mike

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DonnaFA Member
Hi <inline-mention user-id="4054237" username="mwrightorlando"/> , While you're waiting for feedback from the community, I thought you might like to check out the information on becoming <a href="https://www.nationalmssociety.org/Resources-Support/Find-Support/Connect-with-Peers-One-on-One" rel="nofollow">a peer support volunteer</a>. Thanks for sharing your story and for being part of the community. -Warmly, Donna (MultipleSclerosis.net team)
1. mwrightorlando Member
 Thank you DonnaFA for taking your time to respond with the info link to the peer support volunteer program. Looked at the program and am more apt to call a peer support volunteer - at this point in my relapse. Would love to become a volunteer once this relapse passes. Hope you are having a great day!
2. DonnaFA Member
 <inline-mention user-id="4054237" username="mwrightorlando"/> you're most welcome! I'm glad it was helpful! I'm glad it may prove helpful in the future as well! Today, the sun is shining, the flowers are blooming and fragrant and I am grateful! Wishing you abundance and a beautiful and peaceful day! -Warmly, Donna (MultipleSclerosis.net team)
amom2 Member
Hi Mike, I don't have MS but my 28 year old son does. It came as such a shock to me. Nothing like this could have been imagined. Its been hard for me but nothing like it is for him or for all of you great people suffering with this dreadful disease. I just wanted to say thank you for sharing and I can only send my deepest sympathy and empathy. You sound like such a great addition to this world and I pray that your MS will not get any worse and that one day soon there will be a cure. Best wishes....
1. mwrightorlando Member
 Thank you so much for your kind words, as well as your prayers, AMom2. Hoping this is just an extended relapse, going on 10 weeks now, since they diagnosed me with relapsing remitting MS it has never gone this long. When not relapsing, have some slow down in task completion, yet can do most everything, so hoping this is not turning into a primary situatuon. Still so grateful and thankful for all the abilities i still possess. What type of MS does your son have? If he is unable to care for himself or walk, so sorry to hear of his condition. My heart and prayers go out to your son, as well as your family and anyone that is/becomes his caretaker. Having been a caretaker to both parents previously, it is a blessing to be able to help and spend time with that person, but the experience is traumatic emotionally. PTSD is common amongst caretakers. Seek emotional support. Please remember to live in the moment, remember to enjoy the fact that your son, while disabled, is still alive and a part of your life. The best to your family in navigating the changes that MS poses.
rldoll67 Member
I too spent the majority of my career chasing it and through the moves, hard work and determination I achieved what was to be the pinnacle of my career as COO and then the diagnosis of RRMS. Like many, I was having relapses and did not know it and even mis-diagnosed and then the big one hit me...MRI and spinal tap confirmed my worst fear. I was able to keep working and did not disclose my condition to anyone but closest family. Shortly after the big one, I had a relapse and lost sight in my left eye...I was scared. I have vivid memories of walking into a board meeting, blind in one eye, wondering if my eye was wandering, dilated or what if it is permanent or the other eye is attacked. Fortunately, I gained my vision back though some damage was done in terms of speed of focus and distortion which added to the balance issues. My MS was characterized by small flare's between a couple of really big ones. The last one, in 2016, put a nail in the coffin of my career a year and a half later, the organization I worked for elected to not retain my services...now I'm on disability and looking to Ocrevus as well. There is much dysfunction in our services and health care and in an opposite fashion, there is much support and services too, though discovering them is the difficult part. Be your own advocate and don't wait for anyone to ride in and help. Medicare is not available until 2 years after your diagnosis and that is a travesty. Long term disability is not available to those who have been diagnosed. Americans with Disabilities act may serve as a deterrent to bad behavior but it is no shield against it. The escalation model used by most physicians treating MS is a really bad idea and backwards...by that I mean, starting on a low efficacy treatment with mild side effect profile to "fire for effect". Problem is, when it doesn't work, permanent damage is done. Treatment needs to start with the most powerful and effective treatment you can tolerate. I've used the MS Buddy app a bit and have had some good cyber-conversations with a few members though there seems to be a bunch of scammers on these places. These types of forums are good and definitely subscribe to Dr. Boster on you tube...he can't and won't comment on your specific issues but is a storehouse of good information and another voice, a rational logical one at that, for you to learn from. I wish you well in your battle and journey!
1. mwrightorlando Member
 Thank you rldoll67 for sharing your story, providing your thoughts on the escalation model, as well as sharing info on Dr. Foster and MS Buddy. Agree whole heartedly on being your own advocate and on doing due diligence on doctors, treatment plans, etc. Curious, are you taking any meds previously or currently, which ones? You've clearly educated yourself thoroughly on MS, am in full agreement with your next post on the affects and damage caused by the demyelination, lessions, etc. accumulating as the cause for entering SPMS. Thank you so much for your feedback, useful information, as well as sharing about your journey with MS thus far. Look forward to speaking with you again sometime soon. All the best to you and your famliy...
2. rldoll67 Member
 I started using Rebif in 2011. I would estimate my MS was active for at least 5 years prior to diagnosis. I don't know how many therapies were available in 2010 and I wasn't educated anyways. Today, I view Rebif (and all the interfuron's) as low efficacy. I also started taking Ampyra for walking, Vit D and Modaphinil for energy. I used braces to combat drop foot but hated them and one of my issues is weakness in my hip so I can't lift my leg. I also bought a "walk-aid" to electrically stimulate my foot to combat drop foot and it worked very well. It is not covered by insurance and is uncomfortable to wear, but effective. I was still working at the time so I could afford the approximately $5000 out-of-pocket cost . I tried stem cell therapy, again self funded to no avail. I think there is some hope in stem cell treatment but the typical clinic is selling hope in my opinion and the treatment I received, twice, was entirely ineffective and very expensive. Again, I was working and made a good living at the time. I don't recommend stem cell therapy at this time unless you are part of a clinical trial. Anyways, now it's 2015 and I grew needle weary and I was slowly losing more function; bit by bit and switched to Tecfidera. I had a major flare up several months after switching which I noted above. That flare was a game changer. It severely altered my gate, my tolerance to heat (I live in the deep south), my balance and ability to walk any distance. I left the workforce in November, 2017 and have been on disability as soon as it was approved 6 months later. I still take Tecfidera, and am actively seeking to switch to Ocrevus and am playing musical phone tag between the Doctor's staff, the Ocrevus navigator and the insurance...time is running short for me as my COBRA insurance is about to expire. Did you know, at additional cost, you can extend your Cobra another 11 months to bridge the gap to Medicare...well you can IF you ask for it within something like 90 days from your disability approval. I did not know this and I appealed a month late when I discovered this...I was denied. Lesson learned. I'll buy health insurance in the market, though I'm not sure if Ocrevus will be in the cards if I don't get this done...anyways, I've read almost all good things about the efficacy of Ocrevus. I was thinking Lemtrada but too many issues and too many blood tests. My neurologist is a fan of Tysabri (monthly infusions) but logistically that is not a good option. Anyways, to conclude my journey.... as of today...the infusion based therapies are the most effective in my opinion and as I stated earlier, all people with MS should use the most effective DMT they can tolerate as soon as possible. I hope that helps and I wish you well. If there is anything more I can share, let me know. Maybe I'll see you on MS Buddy! Take care!
lorijones Member
Hi Mike, First, I am sorry to hear that you are feeling bad and isolated. The worst. A few quick bits for now: Regarding the friends that you have stepped back from, I encourage you to reconsider at least one or two of them. Not that you want to necessarily always speak of your issues, but there has to be a few that at least would understand and love you anyway. If you can, let them decide, instead of you deciding for them. Keep on the anti-inflammatory diet as much as possible, don't give up on that. I have recently brought my eating game up a few notches, meaning cutting out certain things and am seeing a vast improvement in my brain fog lifting. Keep trying little things. Don't know much about the drug, so of no help there, but there are many places on the web to find info. I will try to send some info soon. This may sound trite, but staying as positive (even though you have every right to feel negative) as possible will help. Will share a anecdote soon. I wish you well and stay connected. Lori
1. mwrightorlando Member
 Hi Lori, Thank you for your kind response and insight into regaining friendships. When I began to lose control of temper from the constant pain and fatigue, even though I am an extremely private person, I shared the diagnosis with friends. The reason i backed away was that I have never beleived that having conversations from a place of pain is healthy to a friendship. You tend to be less patient and apt to say things without much thoughtfulness, leading to their feelings being hurt. Always have been honest with friends, joyful, a source of good counsel when asked, supportive, extremely social, life of the party etc. The pain makes me brutally honest, dulls my tactfullness, etc. This could lead to the loss of long term friendships. It has, even though they know my diagnosis, they still talk to me, look at me differently, treat me differently and say I've changed. Some have simply found no words to say, just backed away on their own. Not giving up on friends, just taking a break until both they and I can rewire the friendship so it's not lost in perpetuity. For instance, during a flare up, my vocal chords were affected necessitating the need to communicate via text. When i told a long time friend that i spoke to most every day and night that i needed to communicate via text for awhile, she took it personally and has not communicated with me since a nasty string of texts from her telling me how selfish I was. Now hopefully in time, she will educate herself on MS even though I told her what the issue was. Or good riddance. Stress is the last thing we with MS need. I was very sick 20 or so years ago with a condition that is 99.3% of the time fatal. I told no one except a few family members what was happening and how I was going to treat it. I beat it and part of he reason why I believe I was able to beat it was because i told no friends so conversations never revolved around illness, i wasnt looked at or treated differently and was able to stay positive because of my efforts to keep conversation and focus off of the illness. This time I confide in all about MS and that's all they want to focus on. You can't receive good health when your focus is on bad health. So while I appreciate your advice and response, I must keep certain people at bay that just want to focus on the negative. I am an intellectual, funny, kind, caring, giving individual who happens to have MS. Just want to focus on the characteristics that gave me such a blessed life and circle of friends/acquaintances. So I will reach out again or make new friends thatbwjen to talk about something other than being sick. So glad you've tweaked your eating habits to reduce foods that cause more inflammation and that it is helping lift the brain fog. You sound like a kind, compassionate, caring person. Thank you for your response, advice and for sharing bout your advancements with diet modification. All the best to you, your family and friends. Hope you are having a great day today and that we connect again.
rldoll67 Member
I'll add one more comment about transition to SPMS...I'm still considered RRMS and based on what I've been able to garner, the transition can be abrupt or mixed...the idea that your disease "morphs" into progressive doesn't accurately characterize it. I've concluded that all of us with RRMS are accumulating damage and disability and some is visible and noticeable and some is not. Every flare that you recover from, leaves underlying damage but your body rewires and your "functional reserve" overcomes it. Some damage can't be hidden and that is what you see. As you lose brain mass and functional reserve, which happens to us all though MS speeds it up, the underlying damage is exposed. I have formed the opinion that it is the loss of brain mass and functional reserve that is the underlying mechanism to the shift to SPMS. Relapses can and do stop, sort of, but damage continues and is exposed as time goes on. I am of the belief that we need to stop the body from attacking itself AND slow, stop the loss of unnatural brain shrinkage...and then the holy grail of MS goals, the remylenation of damaged nerves. Similar to you, "the big ones" were flares that I did not recover from...some came back, but there was noticeable, permanent damage to my body and less noticeable but very debilitating heat tolerance issues, gate, fatigue, and balance etc. Early on, pre-diagnosis, I'd have bouts of vision distortion or dizziness/vertigo etc but they cleared up in a day or over several days...then not so much.
twooldcrows Member
hello Mike ..so glad and sorry for your luck with the monster they call MS...but you are on the right track for looking to the future of not letting it stopping you...i too have had the monster since many years ago but diagnosed in 2004...i have rrms..but it will not stop me and hasn't yet ...was using a cane most of the time in the beginning and now only to walk a long distance at a time...anyway my main reason to say anything is to say on i am on Ocrevas and have been on it since nov 2017...it has helped me so much ...can work outside in the yard just feel so much better of course it is still hanging in there but not like before ...husband says he can see the difference also ....getting ready to go in for another in june...so good luck and always laugh ,smile and to know you are not alone on this journey ...many more of us out here ...take care and have love and happiness in your life ...really helps to laugh at this terrible MONSTER.. we will win...
1. mwrightorlando Member
 Hi twooldcrow2! Thank you for responding with insights regarding your experience with Ocrevus. So glad that you are being helped by the meds, notice the difference yourself, as well as your husband noticing a difference. Having been a motivational speaker, laughter, state of mind, attitude and smiling goes a long way in determining your life's course. Thank you for the reminder that although the disease is rare, we are not alone in this. Only approximately 3 thousandth of one percent of the global population has MS. Agreed that when we smile and laugh in the face of adversity we can conquer all. Best of luck on your journey, thank you again for your kind words, helpful recitation of your experience with Ocrevus and your positive attitude!
kerste Member
Hi, my name is kerry and I was diagnosed only last yr with RRMS (although I had been misdiagnosed for many yrs mainly down to GP nicely labelling me as anxious personality /hypochondriac) . I had a bad relapse in 2017 (didnt know at the time it was ms) but recovered reasonably well after some months. Last yr I noticed symptoms becoming more frequent (pins /needles ,numbness in legs and hands,bladder and bowel issues and sensory oddness,and not been able to cope with stress (I have been a community psychiatric nurse for 30 yrs plus) and just knew that something was not right . Any way cut a long story short MRI confirmed Lesions and neurologist offered Ocrevus above Lemtrada and felt that first line DMDs would not be beneficial. |I had my first Ocrevus infusion in march(dose split having 300mgs on 11th march and 300mgs 25th march.The next full dose of 600mgs booked for 12th September. Believe me I went through so many emotions deciding to have Ocrevus and then worrying that I may have severe side effects and make ms worse. I did have some side effects sore throat ,headache and feeling generally crap for a few days after 1st dose but I took paracetamol and ibuprofen together regularly for a few days and recovered.2nd dose OK no real worries. My anxiety played a big part in this ,I now try to keep my anxiety real and try not to catastrophise (easier said I know) I was one of 3 to be given Ocrevus (Birmingham UK) as it has not been used prior due to funding. I cant say if its helped but what I can say is that its not as bad a I anticipated,I work still ,I function OK ish (still wish MS would P--- Off) but hey life is precious and I intend to live it (believe me I have my off days ). I have gained support from reading others ms logs. All the very best what ever you decide with Ocrevus
1. mwrightorlando Member
 Thank you Kerry for sharing your all to typical experience with getting a proper diagnosis, the help and care you offer to so many others in your chosen profession as a community psychiatric nurse, as well as insights on Ocrevus, your well wishes and how you deal with your anxiety. Hope you see a reduction in relapses, a decrease in progression of lesions and yes, let's hopefully get MS to P--- off during our lifetimes. We will carry on, regardless. All the best to you and your family!
f5hwo4 Member
I was 55 when I was diagnosed and like everyone else I had symptoms at least 20 years before. There wasn't that many DMT's available I chose Rebif it was the latest greatest drug at the time. I took it for 5 years until I had skin rejection. Then I started on Tecfidera and took it for 6 years. I recently had a MRI and my neuro compared it to my first MRI eleven years ago. He said I have had minimal progression. I only had one mild relapse in the last 11 years. I wanted to slow down this disease as much as possible. I think taking a DMT has helped me accomplish it. Potter
1. mwrightorlando Member
 Hey Potter! Thanks so much for sharing your experiences with different DMT's, as well as the good news of lack of significant progression of the disease and the fact that you've only had one mild relapse in 11 years. Looking forward to starting Ocrevus in hopes that it slows the progression of the disease down, as well as decreasing relapses, so I can have a better quality of life by reducing relapses. All the best to you and your family! Continued good health to you...
bkboo Member
Find more about people's experiences with Ocrevus in the Ocrevus Facebook group.
1. mwrightorlando Member
 Hi Bkboo, Thanks for the advice. Really don't go on FB too often, maybe once a year or two. Will absolutely check out the Ocrevus group as well as a few other that have been recommended. All the best to you...