Hello fellow folks dealing with the effects of MS. I was diagnosed quite a while ago, in1987. Initially, demyelinating disease, i.e. MS or multiple sclerosis, caused me great fatigue after I would come home from working a ten or twelve hour day. I was 30 years old and didn't even have a primary care physician yet, but, my wife told me I should find a primary care physician and ask whether that person thought anything was wrong. Well my new primary care physician asked me to make an appointment to see a neurologist since she thought I either was presenting signs of MS or brain cancer.
Now, based on some of my strange actions, my wife questioned whether I really had a brain or not, even though she had typed my PhD thesis., so when my primary care physician asked me to see a neurologist my wife kidded that even my physician wasn't sure whether I really had a brain. Well I saw a neurologist and got an MRI to prove I had a brain, but, my wife asked me whose MRI picture I had stolen. That's how we got through the news that the MRI displayed significant demyelination I my brain which was causing me to display the symptoms of MS, e.g., fatigue, memory loss, difficulty analyzing and solving complex problems, decreased balance and coordination, and so forth. Nevertheless, Was able to continue leading a research and development lab until 1999 when I was asked to take disability leave.
I had been taking Copaxone since 1992 and hope it reduced the rate demyelination. After 2000 I started taking Avonex with the same hope, then after switch to Tysabri which I just discontinued this year of 2018, and now I'm back on Avon again.
I continue to have difficulty maintaining my concentration. Between 2000 and 2010 I tried to start a company, BiotecConnect, Inc., to facilitate technology transfer from academic biotechnology research labs to product development at companies in the biotechnology industry. Without enough customers to keep the businesses operating I had to dissolve it. Since 2010 I have been writing a book based on the research I did to start BiotecConect and my experience in the biotechnology industry. However, maintaining my focus has been difficult to say the least, so though I have drafts for 24 chapters I have yet to complete the final versions of each.
I hope to complete the chapters this year and publish the book and submit articles, based on the chapters, to journals for publication. After that I hope to engage in collaborations with people who are willing to work with me.
That's my story so far. I hope there is no one who is a professional scientist who is also dealing with the diagnosis I have been dealing, but please know I am most willing to compare notes or discuss ideas with anyone whose life is similar to mine in some way.
Dave
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DavidMaskalick
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That’s quite a story you’ve shared! You show not only a great sense of humor, but a great deal of resilience, too.
I’m sorry for the many difficulties you’ve had to face. Though the MS has caused you difficulties with concentration, you’re obviously still very articulate.
Being a “veteran” of MS, you’ll have lots to share. Thanks for sharing some of your story with us. Welcome to a group of warm and supportive folks.
Hi Dave and welcome! That is quite a remarkable story and career. You are an incredibly valuable resource and I'm very glad you're here. (Well, I take that back. I'm terribly sorry you're here...but glad for us). Your understanding of the brain and demyelinating disease, as well as the biotechnology of pharmaceuticals and how they can help is, well, that's the $64,000 question for which we're seeking an answer. I'm really sorry your company wasn't able to gather enough support, as it sounds like it would have been incredibly helpful for many with a chronic disease. I'm not similar to you, at all, but I have a passion for devouring research in any way I can. I'm very interested in learning about different treatments. What I mean is...I'm curious to know if learning to play a musical instrument, per se, (or a foreign language), can help to "engage" the large parts of the brain that have been underutilized and as yet are undamaged. That, along with the medicines available, well, I wonder if there is a way to adapt to the loss of that many have experienced. And, I've been doing a form of Tai Chi and am pursuing becoming an instructor in it. I would also like to explore if forms of yoga (whether it's Tai Chi, Xi Gong, Restorative Yoga) can help with the balance and mobility issues. My personal story is that my husband was just recently diagnosed with PPMS. The neuro thinks he's had it for 10 years. He hasn't started treatments (we'll begin Ocrevus in August). Similar to your wife (I'm ashamed to admit this), I've wondered many times in our 20 year marriage about his brain. He was a gifted woodworker for 30 years, but the strain on his back (a separate injury), his lack of balance and difficulty navigating steps, and his mental fogginess took its toll and he's been out of work for a couple of months. I wanted him to take the time to grieve over the diagnosis and the loss of his career. If there is anything we can do to help you with your book, let us know. There are so many who feel useless but still have so much to offer.
Thank you jeanieU! Both you and your husband have been strong and dedicated. I imagine you and he will manage your future together with that same strength and dedication in whatever you do.
DavidMaskalick welcome to this wonderful group of caring people. I wish you great luck on finishing your book this year and the great things to come from it.
David, we are so glad you have found us! What we promise to give you is a safe place to come and ask questions about your MS, seek information, share concerns, or simply speak to others who truly understand what you are going through. I definitely feel that as soon as you get involved in this chat room by answering questions and posting questions we will get to know you and you will get to know us. By doing so there is so very much we can learn from each other. Sometimes all it takes to de-stress from a bad day is to have a shoulder to lean on or someone to talk to that truly understands what you've gone through! That's what we're here for and that's what we can help to teach you about. I too had to leave my career and go on to disability. The disability battle took me over 2 years to win.😬
You shared a big story with us and perhaps you can teach us about the research that goes on behind the scenes when a new DMT is approved. I look forward to getting to know you better. Take care until we speak again and remember, together we are stronger!
Hello DavidMaskalick, Should I call you Doctor? I have some questions for you but I'm not a Dr., just someone with some time to poke around on the MS websites and the Cleveland clinic etc.. I
I Went to a town hall meeting few years ago about the faces of Agent Orange and how many Generations are effected by exposure! Do you feel my Chronic MS, My brother's susceptibility to chemical poisoning on a drill rig for natural gas and my sister's digestive, ADD, Anxiety and mild nerve problems could be associated? Thank you.
Thank you Kevin. Dave is just fine; no need for Dr. I too often wonder about the effects of chemicals, like Agent Orange, leaded gasoline, pesticides, and cleaning aids, on our nervous systems and physical health. Ugh. But, what can one do? Oh well. We just trudge on and make friends who help us to laugh.
Hey! Kevin_McMillan 😒 keep that AO stuff outta here. You know, that NO ONE knows why we get this, we are just special. 😞🙄
Hopefully they will figure it out someday.💕
People are not immune to the elements, and we are human. We All have different problems beside MS also. ☺
Your sister for instance,? Should see someone! As it could be just a misfire of the brain. Or God forbid something worse. My oldest has what your sister has. 😞
I'm sorry your oldest has that too! My sister has been to some and is doing pretty well on meds. Her dsughters are 19 and 22, they do a good job raising her!😉
DavidMaskalick , you'll find there are all too many stories like yours. MS can be devastating. Even for those with so-called mild cases, it can completely change a person's life, and any plans being made have to be forgotten about or modified radically.
My MS came on just after I got my Ph.D. as I was looking for employment in my field. I found some work that luckily enabled me to work at home but I did reach a point where there had been too many falls (and broken bones) and I knew I wasn't up to working in the sustained way needed for self-support.
I'm not a professional scientist but have kept up an interest in developments in MS research over the years. I was diagnosed in 1980, and there has been considerable progress. They know far more now than they did then but there's still a long way to go.
People do continue to complete projects in spite of MS. Maybe we just learn to expect less of ourselves when it comes to meeting deadlines or turning out something perfect. I have learned to abhor deadlines and goals. Whatever I set out to do will get done when it gets done.
I agree agate, whatever I'm doing will get done when I get it done. I remember in 1984 there wasn't anything approved for the treatment of MS yet, so I found a neurologist who simply prescribed SPEEED for me to keep going through my work day.
Wow - very similar background here. ON in 1985 - possible MS diagnosis. Chem PhD in '86, DMPK & analytical jobs in drug industry until LTD last year. Took various DMDs since 1995, starting with betaseron, then copaxone, rituximab, finally cladribine. I'm starting to help write grant proposals for fun and would be interested in your experiences.
Have you considered newer, better drugs than Avonex? There's been some advances since the 90's. Even if MS is well advanced, still need to treat effectively to slow down damage.
Thank you tnolan2006. I don't know how my experiences would help you write grant proposals but if you want to communicate directly with me my email address is dmaskal1@yahoo.com. I've been looking at the remyelination therapies. My neurologist believes that demyelination slows down very much for people older than 60. So I haven't been asking for any of the newer drugs. Are there anyhow would recommend I consider more closely?
I like cladribine because it's a small molecule & gets into the brain and lymph system as well as blood. Slowly depletes lymphocytes. I took it as SC injections off-label a couple of years ago (cheap). Oral form recently approved for MS in EU, elsewhere.
I sympathize! One of the reasons I had to give up my long tech career was my inability to maintain focus like I used to. My photographic memory was gone too. I was diagnosed in 1999 but the diagnosing neuro said I’d likely had it 10 years or so prior based on the first MRI results.
I hope you are able to find a way to finish your chapters and get it published. Good luck to you!
Dave It seems I remember talking to you a year or two ago, and I truly wondered how you had been doing. I am so happy to see a post from you again. I will be thinking of you and hope you will continue to stay in touch with us. Kelly
DavidMaskalick I really hope you do finish your work on these two and than id love to see that personality and humor you have raise the good cells we have left.You are a serious scientific person to deal with but gotta say, would love to see you tour using your partner in crime...your wife who is still trying to prove the brain is there theory.I hope other sites have your note so that you receive the contact you need.The result may be a cure...NEVER know...ty!
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