Mitral Valve Prolapse & Transverse Myelitis: Part IV - Where I am Now

So this is where I’ve been: struggling to rebuild my strength enough that I can walk, so that I can rebuild my endurance enough that I can return to being a contributing member of society. People on the TM Internet Club often joke about the often-heard comment ‘but you look normal!’ It’s frustrating, because as you improve, people think if you can stand up and look okay, then your problems are solved. They can’t see the nerve damage (much of which I haven’t even bothered to describe – but trust me – there’s a lot of nerves below T6 – T8 which control a lot of bodily functions that a normal person takes for granted!) It’s very frustrating to have people judge you by what they see, and assume you should be able to do more than you can – especially when they only see you on the days when you feel good enough to get cleaned up and go out! Which is why I wrote this blog in the first place: I’m tired of being misunderstood! (No . . . not because I wanted sympathy!)

And where am I now? I guess that depends on how I’m feeling on the day that I try to answer that question. If I look at where I’ve been, I’d have to say, I’m doing great! If I look at where I need to be, in order to go back to work, I’ve got a ways to go. 'On a good' day, I can get up, get cleaned up, do what I need to do, and then say, ‘Okay, what shall I do now?” I’m alive! I almost feel like a regular person! Sure, I will still limp and have to move more slowly so I don’t lose my balance. But I can function. I just have to remind myself to rest now and then during the day, or it won’t stay ‘good’. So it’s not totally ‘normal’, but still ‘good’! I could probably function in a part-time job on a day like that – if only I could be sure of having enough good days in each week to hold down a job.

On a bad day, my only choices are breathing, resting, and eating, in that order. I’m just kind of ‘spaced’, can’t think straight, and am totally dysfunctional. On those days I try to tell myself that my body is actually healing while I’m resting. (I hate to think of it as just wasting time!) I plan carefully when walking from one room to another, because each trip requires a major expenditure of energy, and I’m very limited on those days. In the last week, for example, there were five days in a row which basically fit into this category. I had the energy to shower and get dressed on only three of those days.

The rest of the days fall somewhere in between: I can force myself to do at least one chore (like wash the dishes); sometimes once I get going, I feel better and can do quite a bit more. And the ‘okay days’ are more often getting to be better. Still, on an ‘okay day’, it would be a little scary if I had to get up and go to work, but I think I could force myself to do it. On a ‘bad day’ it would be impossible! The real problem would be when the ‘okay days’ started turning bad from forcing myself too much! So there’s a lot of frustration. Fortunately, I’d already learned from MVP how physical things can affect my mental outlook – and vice versa – and am usually able to overcome the temptation to get depressed over it.

The good news is that the ‘good’, and ‘okay’ days seem to be improving. The bad news is that the progress isn’t consistent, so it’s not like I can say, ‘Okay, I feel pretty good this week; by next week I should be able to go back to work.’ It’s been more like ‘two steps forward – one step backwards’. That can be pretty discouraging until I look back and see how much better I am than I used to be. So I must be making progress. And I also have at least some feeling in a lot more places, than I used to. Sometimes it means more pain, but as my shiatsu therapist keeps reminding me, ‘pain is good’! I think you have to have been totally numb for a period of time, to really appreciate that, but in my case, yes, I do appreciate it! Feeling anything, even pain, means that the nerves aren’t dead – only damaged. That means there’s hope for at least partial healing. And the ‘pain’ I deal with is nothing compared to what a lot of TM people have.

So I really shouldn’t be complaining. Actually, it’s been a blessing! Well, maybe not one I would have asked for, but nevertheless, I know I’ve learned a lot that I needed to learn, that I might not have learned any other way. All the other things that I've been given an opportunity to learn, with this condition, could be a whole post by itself, so I won't go into it here. But I do want to express my gratitude for a Father in Heaven that allows us to suffer in order to grow and learn. And express my faith that the ‘end will be better than the beginning’ – maybe not necessarily in my condition, but for sure, in my understanding and in a lot of other things that are really more important. Thank You, Father.

Mitral Valve Prolapse and Transverse Myelitis: Part III

What is TM and How Does it Affect the Nervous System?


Transverse Myelitis (TM) is a condition caused by inflammation of the myelin (the insulation covering the nerves) in the spinal cord. Wherever the lesion is located on the spine, all of the nerves below that point may be affected (either permanently or temporarily, which is why healing with TM can be either full, partial, or non-existent). I’m fortunate in that my lesion is at T6 –T8. For many people, it’s higher and their arms and even lungs are affected. They can become quadriplegics and can’t even breathe without a respirator. TM has been compared to multiple sclerosis (MS), except that MS lesions can be in the brain, whereas TM is only on the spinal cord. TM is generally thought to be a one-time occurrence, while MS involves multiple lesions. The ‘transverse’ part refers to ‘across the spinal cord’. I’m also lucky here. Only one side was totally paralyzed; the other side had (has) only minimal numbness. I’ve been said to have a ‘light case’.

That said, what’s my problem? I seemed to be healing pretty well, and then after about 9 months, it started to slow down, and even regress. I became concerned and pushed myself even harder to exercise, which only made it worse. I started to notice that some of my biggest problems were similar to the ANS dysfunction of MVP, but only now they were exaggerated! (That was enough to panic me!) I read more about the little that’s known about TM – another condition that doctors don’t know much about but in this case, not because it’s not serious but because few doctors have seen very many cases. It’s considered ‘not rare, but unusual’. I was really lucky that the ER neurologist recognized it and began the proper treatment – 5,000 mg of methyl-prednisone over 5 days – which needed to be started within 12 hours of onset to prevent permanent damage.

Well, guess what? One of the side effects of TM is – you guessed it – ANS dysfunction! Just what I needed: a double whammy! As a matter of fact, this is how Johns Hopkins Hospital’s Dr. Douglas Kerr, one of the chief researchers of TM, defines the condition: “Acute transverse myelitis . . . is a focal inflammatory disorder of the spinal cord resulting in motor, sensory and autonomic dysfunction.” And fatigue, along with a myriad of other things, is listed among the common symptoms of TM.

Only now, the ‘walking for exercise’ thing couldn't be applied because I couldn't walk – and when I finally could, it was too slow to be considered ‘exercise’. Any kind of walking created so much tension that it soon built up and turned to migraine (remember how with ANS dysfunction, built up tension is more likely to get ‘stuck’ there). Migraines are such a pain (pardon the pun) not only because of the pain and nausea, but because of the days of my life that get lost before I can fully recover from each serious migraine. I need exercise to improve but too much, builds up more tension which . . . (are you starting to get the picture here?) In addition, I needed to walk to help re-build my bone density, which had been royally zapped by the 5000 mg of steroids used to arrest the inflammation!

Watch for Part IV, the Conclusion, to read about what I've done and where I am now.

(That's if you still want to go on, after all this reading! That's why it's in 4 parts - not because I'm trying to leave you in 'suspense', but the whole story's kinda long. If you've followed it thus far, I'm impressed. If no one has, it doesn't matter. I've put it on paper for my own satisfaction. And if anyone asks, I don't have to try to explain it - again. That way, if they're just asking to be polite, I won't have to bore them. If they really want to know, they can read it. :)

MITRAL VALVE PROLAPSE and TRANSVERSE MYELITIS: Part II

What is MVP and How Does it Affect the Nervous System?


Mitral Valve Prolapse (MVP) is a condition wherein the mitral valve of the heart is prolapsed (slightly deformed so that when the valve closes, it doesn’t completely seal off the chamber – blood can seep back into the previous chamber.) It’s seldom serious – at least, not in terms of life or death. I think the statistics say only about 1 in 1,000 need surgery – maybe even less than that. The rest of us just have to put up with irritating and quirky symptoms, which are many. They’re different in different people, and not always present at any given time in any one person, thus making it difficult to diagnose. And the fact that it’s not really serious prevents many physicians from paying much attention to it – another reason that it often goes undiagnosed. Lyn Frederickson, MSN, cardiac nurse, and director of the first Mitral Valve Prolapse Center in the world, sums it up well when she describes MVP as “not life threatening, but life-style threatening.”

Most of the symptoms are actually caused by dysfunction of the autonomic nervous system (ANS). The last time I checked, the theory was that the ANS was forming at the same time as the mitral valve, so both were affected. The basic function of the ANS is to keep a balance: bring you down after a high (like meeting an emergency; fleeing from danger); bring you up to where you can function after a low (like relaxing; sleeping). The symptoms range from fatigue, chest pain, and shortness of breath, to migraine, anxiety, and panic attacks – there’s about 30 symptoms, some opposite from the others! That may not seem to make sense – unless you remember that the job of the ANS is to keep a balance. Therefore, if it’s not functioning properly, the extremes will rule! This, of course, makes it even harder to diagnose – it’s not a simple set of symptoms peculiar to only this condition. Many people are never diagnosed. It’s estimated that MVP affects from 10% to 20% of the population. More women than men are diagnosed, but that’s likely only because they’re the ones that are going to notice more frequent symptoms because they’re the ones whose hormones regularly take them up and down, thus requiring a system that keeps them on an even keel. MVP is hereditary, but like many conditions, some people may be more sensitive than others, to actually having difficulties with it.

As already stated in Part I, there's no cure; just learning how best to deal with it. If you even think you might have MVP, it's worth checking it out. Basically, the things you need to do to live with the symptoms are the same things as you would do to live a more healthy life-style. In spite of all their complaints, they say that people with MVP are often the healthiest people around, because their systems just can't tolerate abuse without over-reacting, thus forcing them to live a more healthy lifestyle. That's opposed to other members of the population who can ignore general health principles and seem to flourish - that is until it all catches up with them and it's too late to change - their health has been permanently compromised. So, as irritating as the quirky symptoms may be, there's actually an upside to this 'affliction'. It's just hard to remember that sometimes!


NEXT: Part III, What is TM and How Does it Affect the Nervous System? This is the element that created the Double Whammy!

MITRAL VALVE PROLAPSE and TRANSVERSE MYELITIS: A Double Whammy! Part I

I feel like I’ve gone through most of my life with my hands tied. When I finally learned to untie my hands so that I could function more normally, someone managed to shackle my feet!

I was 50 years old before I was diagnosed with Mitral Valve Prolapse (MVP). Before that, everyone told me that there was nothing wrong with me. Somehow, my body told me differently. I was either stuck in ‘high gear’ and couldn’t come down until I finally crashed (that usually meant migraines) or I would get stuck in ‘low gear’ and could barely move; I felt lethargic, and had a hard time getting out of it. When I would finally get a good day, I’d try to make up for lost time, and end up doing too much, causing me to ‘crash’ again. And by the time I was a young mother, the good days came only once in 8 or 10 days – maybe. I think that’s when I really perfected the habit of pushing myself and refusing to listen to my body. At the same time, there were people trying to tell me that there was nothing wrong with me, basically implying – if not openly saying – that I was either ‘lazy or crazy’. It was harder to refuse to listen to them.

That’s when things started getting more serious, because all that criticism only created really fertile ground for depression! I was fortunate enough, though, through the years, to run across various things that helped: general Gospel principals (without them, I would have been suicidal), and specific Priesthood blessings (which led me to discover and utilize things like positive attitude, exercise, and nutrition). I began to develop the belief that I have now, that many things (like depression) that are considered mental, often also have a physical side. Then when I was finally diagnosed with MVP, I not only found out that there were many others who suffered the same symptoms that I had, but had also suffered similar criticism and ridicule before finally finding a doctor able to diagnose their condition.

My new knowledge didn’t change my condition – there’s no cure for it. But it helped me to finally realize that my body hadn’t been lying to me, and that I should have been listening to it instead of to the people who didn’t know! Reading all the MVP literature I could find (it was pretty sparse then) also helped me to see more clearly that, though there are no ‘cures’, there are ways to handle the fatigue and stress and constantly fluctuating ‘ups and downs’ as well as other symptoms. One of the biggest helps to controlling my energy level as well as my migraines, was exercise. (For me, that meant walking, since I don’t consider myself coordinated enough to do much else :) Limiting sugar and eating more complex carbohydrates (like whole grains and vegetables) was another thing that helped. It wasn’t easy, but if I watched the sugar, ate plenty of vegetables, walked several times a week, and drank plenty of water, I could live almost like normal. (Of course, it’s not ‘normal’ to live like that – it still made me different from everybody else – but at least now I was feeling good while I was being different! :)

And then, Transverse Myelitis (TM) hit me! I was paralyzed from the rib cage down on my right side, and had no feeling in the skin on my left side. How was I to walk? If exercise was what helped me to function normally with MVP, what would happen now?

And what exactly are MVP and TM and how do they affect the nervous system?

(to be continued)