My Story (so far)

What might seem odd, after having published 42 posts, is to be writing something entitled “My Story”.   Since I wasn’t clever enough to have made my last post The Answer To The Ultimate Question Of Life, The Universe, And Everything, I decided it was high time to write a short biographical, with all the interesting bits in one place.  You see, lately I’ve been joining various online groups — mostly MS-related — and I am finding the redundancy of “introducing” myself over and over again to be incredibly tedious.  The future plan?  Point ’em to this tell-all page.  Brilliant! So, with apologies to those who have already slogged through 42 posts, here goes …

When did you first experience MS symptoms?

First, a disclaimer:  I detest this question!  Tell me what is definitively an “MS symptom”!  I had a single attack of optic neuritis in my right eye around July 4, 1997 (I was 31 years old).  It came on suddenly and blinded me for a couple of weeks; my sight gradually returned to normal.  I consider this event to be the first definitive MS episode.

But what about the strange headaches I started getting, out of the blue, at age 10, that no doctor could diagnose?  They were more like strokes than a headache:  out of nowhere, my vision would suddenly get “weird”, in which I could only see pieces of things (faces with missing ears, nose, or eyes; written words on signs were unreadable because of missing pieces of the letters), sounds around me were distorted, one side of my body (arm and face) would go partially numb and feel “detached”, slurred speech, and  cognitive function was severely impaired (as in, I couldn’t remember my own name).  These symptoms would then be followed by the worst headache ever.  Today, the medical world would probably call this phenomenon a “classic migraine with aura”.  But were these neurological events really the first symptom of MS?  Now you see why I don’t like this question … next!

How long did it take to get your diagnosis?

Ugh!  Another question that is difficult to answer!  I got a diagnosis on Oct 30, 2012.  But in addition to the question of  “do I start counting from 1975  or from 1997, which means my diagnosis took somewhere between 15 and 37 years”, the real problem is:  I don’t yet have a definitive diagnosis!   I have a “somewhere between possible and probable MS” diagnosis.  Can we please get to some questions that I can actually answer?!

What was your presenting symptom at diagnosis? 

Oh please!  Really?  Is it really asking too much to have a question with a real answer?  Fact of the matter is, I didn’t have a specific presenting symptom when I was diagnosed. My reason for landing in my current neurologist’s office was due to a completely serendipitous discovery …

I’ve been feeling bone-crushing fatigue for many years. Those strange symptoms that started at age 10 would also make their appearance a few times a year but an episode would never last for more than a day, and more often than not, I’d just get the weird stuff without the headache.  Along with the fatigue was what I can best describe as cognitive sluggishness (fishing for words while writing or talking is the predominant issue).  Also, I got uveitus (in both eyes) a couple of times, and doctors kept asking if I had rheumatoid arthritis.  Between my first neurologist visit in 1994 and my diagnosis, I had seen no less than 5 neurologists, all of whom declared me to be a healthy person who happened to have migraines, and attributed the fatigue to depression and stress.

By the time I ended up living in California (my current home), I had “had it” with trying to identify the source of my fatigue and subjecting myself to doctors who seemed more interested in throwing “happy pills” at me than considering the possibility that there might be a physical reason for my fatigue. I had prepared myself to just “push through the fatigue” (like every other non-lazy person does?) and get on with my life.

I was in the optometrist’s office for a way-overdue eye exam (took some time for me to set up that appointment, to accept the fact that I  was likely in need of bifocals!)  Two abnormal OCT scans showing severe thinning of the retinal nerve fiber layers in both eyes initially indicated glaucoma.  But my eye pressures were quite normal, ruling out glaucoma, and rather indicating a possible neurological problem.  I was given a referral to what would be my 6th neurologist.

How frequently do you relapse?

I don’t seem to have relapses.  Yeah, weird.  When fellow MS’ers talk about “relapses”, I honestly don’t know what they are referring to.  Short of a distinct attack like optic neuritis, I honestly don’t know how I would distinguish a “relapse” from “getting older” from just the usual aches-and-pains of life.

Take for example, what has happened just recently:  I’ve started experiencing weakness and pain in my right arm.  The neurologist thinks the problem is “golfer’s elbow” — tendon inflammation,  and my cardiologist has not yet excluded the possibility of a vascular problem.  In summary, I am being treated as a relapsing-remitting MS patient, but I don’t have relapses that I can clearly point to and say “that is a relapse”.

What treatments are you on?

Oh good, finally a question that I can answer without a string of caveats! I’m taking Copaxone.  I had a rough start with it, but things improved somewhat and I’ve been taking these self-injections somewhat steady since about Jan 2013.

How did your neurologist diagnose you? 

Although she never said so explicitly, I believe that my neuro made her diagnosis based on the MRI, my neurological history (optic neuritis many years ago, constant fatigue), and the OCT results. She discouraged me from doing a spinal tap, a professional opinion for which I was more than happy to accept without protest.  Needless to say, my diagnosis isn’t “textbook” and doesn’t appear to strictly (or even loosely?) adhere to the McDonald Criteria.

But there are some caveats (what’s new?!):  the MRI does show about 3 distinct lesions in locations that are “MS-like”.  One of the lesions has a “Dawson fingers” appearance, which is a MS feature.  None of the lesions are very big.  Most notably, I now have a long record of brain and cervical MRIs, and (taking into account the fact that the technology has improved over those years), the MRIs show exactly the same thing — the same lesions appear in all the MRIs going all the way back to 1997, and the lesions have never been “caught” showing under contrast (eg, they never appear to be “active”).  The hallmark of MS — relapses and new/changing lesions — is not evident in my case.

How does MS affect you on a day-to-day basis? 

The fatigue is still there, but on the worst days, I take Nuvigil, which works wonders with not only the fatigue but also the cognitive sluggishness.  I am still fully capable of working full-time in a demanding job:  I am a professional astronomer who works as a project scientist for a major mission within a U.S. federal government agency. I have to think on my feet, address large audiences (including the occasional TV or newspaper reporter), do math in my head, write complicated software, deal with fellow colleagues who would blend seamlessly with characters in the The Big Bang Theory TV series, and provide compelling reasons for why my mission is relevant to politicians who are largely clueless about science and wonder why the money wouldn’t be best spent on … oh, I don’t know … buying more guns.

Some days, when my tail is really dragging, I’m not sure how to get through the day.  But pushing real hard to just get through the day is the key … if what I have is indeed MS, then pushing to or beyond my limits will not cause further physical damage (which I verified with my doctor).  Because it’s just easier to crawl back in bed than force oneself to get through the work day, I make a lot of bargains with myself (“if you’ll just get up now and get on to work, I’ll let you go see that movie on Saturday…” )

I’m also an avid outdoor person:  I like to do hiking and biking.  There are days when doing either is challenging.  I’ve learned that for days exceeding about 92 degrees F (about 33 C), I’m better off not trying to do a bike ride because the ride will wipe me out for the rest of the day.  In spite of my fatigue, I do about 20-30 miles every weekend on my bike, and hope to participate in an MS 150 charity ride this fall (150 miles over a 2-day weekend).

I can’t think of any more “commonly-asked” questions that I haven’t already covered, but feel free to ask me if I’ve left out anything you’d be interested in hearing about.  I’d like to hear your story, as well!

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9 thoughts on “My Story (so far)

  1. Really interesting to get to know you this way and what a great idea! I find myself mind-numbingly re-introducing myself over and over and each time it gets more and more basic. “27, was paralysed recently, not anymore, still can’t pee and my visions a bit blurry” 🙂

    Liked by 1 person

  2. So have you noticed the social media marketers in those groups trying to tout their medicine as the best? If you even try to tell them, MS is preventable or curable you will be thrown out. Try asking them if any of them are social media marketers. Gone for sure! Just keep your eyes wide open in those places. You never know why people have such a strong opinion and how they benefit financially. Anyway, back to your optic neuritis and arm weakness. Your cardiologist is amazing even mentioning vascular problems – he or she must be a genius and unafraid of the prevailing controversy surrounding it. Yes, there is a connection between your vascular system and your nervous system. Your whole body is interrelated. So, if your nervous system is experiencing demyelination then your vascular system is also affected. Try lifting your arm if you have the mobility to do so. This should relieve some of your pain. Also, gently touching your veins like a phlebotomist should help relieve the pain. Have you tired rubbing it really hard and you just cannot seem to rub deep enough to get relief? That’s not the right direction. It’s not your muscles but your veins…

    Also, about how do you know about relapses. You may be able to see lesions during a relapse. So if you see lesions, you have a definite relapse.

    I found facts substantiated by research showing a cause of optic neuritis. Did you use any type of eye drop, mascara, eye liner, concealer, or eyelash growth stimulator during the time of the optic neuritis? An ingredient or mixture of ingredients causes demyelination on the nervous system. If I go into this here, you will need a textbook. I am going to do what you do so you don’t repeat yourself and point you to my blog here http://jesusdiedandlives.wordpress.com/2014/02/01/bacteria-implicated-in-multiple-sclerosis-and-phospholipase-and-contact-lenses/ . I had to look for that. If the science intrigues you, please begin with Death by Food and read through the blog. The evidence is there. You may identify foods that you are eating or DHA supplements you take that are causing your arm pain. I’ve extensively and rigorously tried to include products that cause multiple sclerosis to help you heal. Here’s to your health and healing. May the Lord richly bless you with his abundant goodness.

    Liked by 1 person

  3. Thanks for the detailed reply, and for stopping by my blog, jesusdiedandlives. As a life-long wearer of contact lenses, I was wearing contact lenses at the time of my optic neuritis attack. The idea of bacterial origin for the attack is intriguing. Indeed, there are other bacterial agents recognized as also causing optic neuritis: syphilis and Lyme disease. I should mention that even my neurologist is not completely convinced that the (old, unchanging) lesions that show up in my brain MRIs are caused by MS … she says that without seeing some changes or new activity (eg, contrast-enhancing) in them, that there is always the possibility that they, along with the optic neuritis attack, were all caused simultaneously by a single one-time viral or bacterial attack. If only I had access to the MRI that I had taken, 2 years prior optic neuritis attack!

    I agree that my cardiologist is a good doctor! I wouldn’t go so far as to say, though, that he is looking for a vascular-related reason for my demyelination, however. I would say that he is being careful not to just blame the arm weakness on MS until a vascular cause has been ruled out.

    You are obviously rather knowledgeable of MS to even be aware of the ongoing debate/controversy regarding the alternative underlying vascular explanation for MS … are you a fellow MS’er? Or perhaps in the medical profession? Thanks again for stopping by and taking the time to bring awareness of this possible intriguing role of bacteria in demyelination.

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  4. I am so glad to have met you too:) Annnd I will be following you. I won’t be posting in my MS blog often, but I WILL check my “reader” from time to time. I’m also looking forward to getting my new blog on marriage up, and sharing it.
    You really made me re-think (almost) the Nuvigal. spelling?? Sounds like I may have actually been able to continue teaching with it. I was just so afraid of everything back then. The disease AND the treatments. Wish I had this back then to read. The good thing is that people are reading you “story” now and they will be able to take advantage of your experiences.

    Liked by 1 person

    • Oh, Gosh, Estizer — I didn’t realize that you had left a comment here until I was doing some clean-up on my account earlier this evening (I really don’t care much for certain functionalities of WordPress, truth be told). Thanks very much for your kind words! And finally, yes, Nuvigil is a wonder drug, as far as I am concerned — you definitely should ask your doc about a prescription (or a sample pack, to see how well it works for you). I plan to do a whole blog post about it, soon (in typical fashion for me, that post has been about 80% written for the last 4 months, waiting for some polishing and final edits!) hope you are doing well. Have you got your new marriage blog up and running yet? If so, I’ll check it out!

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  5. Hey…It’s me:) and like you, it takes me a while to see things, and I too am not pleased with some of wordpress:( Having said that…no my new blog is not up in part because WordPress has frustrated the be-geezies out of me! But I won’t/can’t give up. I’ve recently gotten an acct. with Bluehost. The fact that I’m still not up, and frustrated, probably speaks more to the fact that IM more the problem than them.
    But, I will NOT give up!!
    Hope you are well and I’ll keep you posted:)

    Liked by 1 person

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