Light at the End of the Tunnel

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Light at the End of the Tunnel

Postby NYLON on February 25th, 2013, 9:27 am

Two and a half years ago it started with a twitch in my thumb. Within a matter of days, it was everywhere. I ignored it for months, chalking it up to side effects of migraine medication I was on. However, about 6 months after that first twitch, I couldn’t ignore the symptoms any longer. While I was lying in bed one night, my legs went crazy. All of a sudden, I felt hundreds of “ants” running up and down my legs all while they both twitched like crazy.

2 years before that night, I had had another scary incident in which I began losing my vision periodically and becoming very dizzy. These episodes turned out to be migraines. However, it took months to diagnose and had left me with an overwhelming health anxiety – one I still face everyday. Now, lying in bed with legs twitching and crazy sensations running up and down both of them, I was sure something was very wrong.

After 2 weeks of angst I finally got myself to a neurologist. Upon mentioning the twitching, he really didn’t take it seriously – saying several people in my demographic (I was a 27 year old female) had these sorts of problems and they were nothing to be concerned about. He could see how worried I was though, so he sent me for blood tests and scheduled an EMG.

Two weeks after that initial appointment I returned for my EMG, along with my fiancé who had come for moral support. Of course, he expected everything to be routine and normal. I, on the other hand, was hyperventilating as we sat waiting in the lounge. If you’re reading this, you probably know how health anxiety works. It turns out, in this case, I was right to be a little worried. When we walked in the office, the doctor told me my CPK levels were really, really high. This basically signals there is a problem with your muscles breaking down. What we would later find out was that the moronic doctor hadn’t told me not to work out before my test. Not only had I worked out, I had worked out with my personal trainer focusing on my arms before they drew blood FROM MY ARMS. So, yeah, the muscles in my arms were breaking down! That night, however, the doctor assessed it to be some sort of muscular atrophy.

After getting those results, I had my EMG. And guess, what… another abnormality. I had slowed conduction in my left leg. So, now, at this point, things were looking bad. Still, not once did my doctor think ALS was a possibility (note that, twitching and abnormal results are not an all or nothing diagnosis, there are hundreds of things it could be). He did, however, preliminarily diagnose me with CIDP and scheduled a spinal tap. I did NOT handle this gracefully. I pictured myself in a wheelchair, I thought I was dying, I was convinced I was doomed – all despite the fact it wasn’t confirmed and people with this disease go on to live complete, full, almost healthy lives with treatment.

Well, anyways, after 2 weeks of waiting to get the spinal tap, new blood work and the results, we found out I didn’t have CIDP. I then went to wonderful doctors at Columbia in New York and they confirmed that I was perfectly healthy except a bulging disk in my lower back was causing a bit of damage in the nerve in my leg, which is what caused the slowed nerve conduction.

Now, I tell this story for 2 important reasons: (1) All of these tests took months and during that time I lost months of my life lost in an absolute panic, and (2) My symptoms were 100 times worse during this time period than they have ever been before or after.
From my first test, to my final check out at Columbia, the dates were about January 2011 – August 2011. In this time, I can’t even tell you what else happened. I was so depressed, anxious, and out of my mind with worry I couldn’t even function. I thought my voice was going because the ALS was eating away my tongue muscles, I was scared of tape measures because I thought I would measure my calves and one would be smaller than the other, every time I tripped I thought I was dying, I felt I couldn’t leave the house as I waited for test results to come back because I was certain they were my death sentences. I was obsessed with googling things. I never made a friend in New York, where I was living at the time. I couldn’t even string together sentences because I was so lost in my own head: scared, confused, convinced of the worst-case scenario.

Guess, what? 2.5 years later, I’m alive. I’m living in London – I’m healthy. I’m starting a business. I’m getting married to my best friend in a 3-day wedding in Tuscany in 4 months. There is a light at the end of the tunnel – but you have to dig your way out.

My second point about my story is that my symptoms absolutely raged during the time I was being tested for everything. There is not a symptom in this forum that I didn’t have. Some people think if your tongue twitches, it is the worst sign possible. My tongue twitched, and buzzed, and tingled. It was so bad I had problems pulling myself out of bed. It was all I could see, hear, taste, feel for weeks at a time. I was sure I was doomed. The Columbia neurologists never saw these twitches. Later, my migraine neurologist thought it would be fun to have a look and said, “oh yeah, your tongue does fasciculate.” Who knows?

I had buzzing and tingling so badly I would wear jeans and socks in 110 degree weather just because it masked the feeling. My left shin and arch of my foot were the worst. All I remember about my law school graduation day is being sure I had MS because the tingling was so constant and so bad. About two weeks later I received the results of my MRI: NO MS. I lost a happy occasion to worry though.

I still get tingling and twitching, but truly it is 1/100th of what I had when I was in the high-stress of testing to see what was going on. And, also when I was focusing on every symptom.

What I have learned through these two years, and what I wish someone would have given me is an action plan. In the midst of your darkest hour, there are three important things you must do to pull yourself out of the fear and obsessing over your symptoms:

1. Get a counselor. You have come down with symptoms that are known to provoke anxiety and fear. Once the anxiety and fear take hold, it is very hard to get out of the cycle and if you let it, they will permeate every aspect of your life, for years to come. It will go beyond BFS. I saw this because my fear began with my migraines, it went to BFS, and I still struggle every time I have to go to the doctor for any minor ailment. The mere fact that you are on this website says that you are not the type of person who can merely brush things aside; you are worrying and this worry will take you over if you let it. Be stronger than the fear. Be brave and admit that right now life has given you something difficult and you need some help to get through it. If you let it, this experience will make you stronger.
2. Get the basic tests. Get the tests your doctor tell you you need. No more, no less. If they tell you you are okay. You ARE. Googling won’t help you or tell you anymore about your condition, by the way.
3. Work out. Do not read on this website that exercise intolerance makes it impossible. Just start very slow. Find what works for you and do it. First I tried reformer pilates and it made my feet cramp so I stopped, I tried a few other things and then I found bikram – which I love. It truly helped everything – my mind and body –so much. You have to find what works for you though. And, take it very slow, and be persistent. You will get an enormous amount of satisfaction knowing you persevered when it was difficult. It will also simply make you feel better to know your body is capable of handling physical activity.

Make a plan for yourself and follow it. The great thing about BFS is that you are only limited as much as you limit yourself. If you let it, it will make you stronger.

Don’t ever forget, you aren’t alone. Many people have come before you, and we have all been okay. xoxo
NYLON
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Light at the End of the Tunnel

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