MS Life

Today has been a crazy sort of day. I woke up at 4 AM because I was too hot and you know what heat does to people with MS. So I crept downstairs to cool off. Of course, I never went back to bed. I always leave my computer and the glow of the screen beckons me.

I have been at my computer most of the day working on this Word Press site. I’m doing this for you and I’m doing it for me. I feel that there needs to be a better way to communicate between all of us. Unfortunately, we are too many. So the Internet becomes a resource for us. I will do my best to provide a site that all of us can relate to.

I had an interesting conversation today. Actually it wasn’t a conversation it was through e-mail. He mentioned a symptom of his that totally floored me. The reason why is because he described a symptom that I had been having for many years now. Allow me to tell you the story.

About 20 years ago, I began to have tiny twitches in different parts of my anatomy. I didn’t know what it was. They came out of the blue and lasted but a few seconds. As time went by, they became stronger and lasted longer, however; I never knew when to expect them. They still came out of the blue. And then there was a change in the symptom. I started to have them at night. At first I thought that they were that sensation that you get when you are about to fall asleep and you feel like you’re going to fall off the bed or something, so you jerk. That is what happened to me. But my jerks came from my torso.

These jerks became stronger and lasted longer as time went by. And then they began to infiltrate my daytime. It was an abdominal sort of jerk which included my shoulders. And again they were an embarrassment to me because I never knew when they were going to happen.

I saw doctor after doctor. They looked at me as though I were crazy. At this time, because I did not know that my symptoms were neurological, I was still seeing an internist. I was miserable with these jerks. They took over my days and nights. I would lie in bed and my husband would hold me to try and quell the jerks. But that didn’t help. Allow me to be frank with you. Having an orgasm was a nightmare because when you have one, at least for me, you sort of go into a spasm. Well that would initiate a jerk that lasted forever it seemed. So that put a damper on sex.

I can remember a time when I was on holiday with my sister and we were walking into a mall. There were workmen on top of the building doing something or another. Suddenly there was a loud clang. That initiated a jerk. It happened while I was walking and it made me stop and I was contorted with these jerks.  My sister didn’t know what to do because I had not told her about it.  Eventually they stopped and I had to sit down and explain to her what had been happening to me. She was the first one outside of my husband that I told about all the mysterious things that had been happening to me over the past few years.

We moved out of state and so I had to start all over again looking for doctors. By this time I was under psychiatric care as well. I was diagnosed with posttraumatic stress syndrome and rightly so. I was placed on therapy and I was taking many other drugs. But all the drugs that I was taking were for different occurrences of symptoms as it is today. I think we moved twice more before I was finally diagnosed with MS. And I’m sure you all know how long that takes if your tests do not provide a black-and-white portrait of MS.

I had sleep studies done and I was diagnosed with sleep apnea which to this day I feel is incorrect and so does my husband. They never watched the film that they take while you’re sleeping. They just look at all the reports that are spewed out of their machines. I had many episodes of non-breathing but that is what happens when you have a jerk. All of the air in your body gets pushed out of you as you jerk. And one jerk follows another by seconds where it appears to be a continuous jerk whereby you have all these tiny seconds of non-breathing episodes.

To this day I still have these jerks. I have since learned that they are called myoclonic jerks. They can also be call hypnogogic jerks. They are closely related to restless legs syndrome which I have to the extreme as well. There are medications that help but don’t stop jerks. But at least the medications help to modify their severity.

The other thing that made them so embarrassing to me was when I had the strokes and the air was pushed out of me I would make a guttural sound. I couldn’t help it.  So if any of you have this strange symptom tell your doctors my story and see if this helps. It seems that when doctors are faced with unusual symptoms that are not your average everyday type of symptom they forget that these are real, there are medical terms for this, and that there are medications that help. The medications that help me for this are Parkinson’s drugs. It is a movement disorder and you should seek help from a neurologist who specializes in movement disorders.

So be forewarned. If you are experiencing jerks in your arms or in your legs and they are arbitrary, unexpected, and very sudden lasting but a few seconds, you should relate this to your doctors because they could turn out to be a nightmare that you don’t want to go through. I take these jerks in stride now. When they happen and if they happen in public they are not so severe and I can get away with pretending that I was startled. Oh, and by the way, if you have a strong startle reflex which I do, this is also related to it. And what I mean by an unusual or strong startle reflex, it means that your reaction to a noise or to someone entering the room unexpectedly provokes in you a very strong startle reaction, that too is a movement disorder.

What bothers me is that rather than pulling out their manuals to try and find out what is wrong, particularly with women, they suggest that you see a psychiatrist or ask you if you have been under any stress. I always respond with, “of course I’m under stress, wouldn’t you be if you were jerking around?”

Don’t let them send you running to a psychiatrist. Be your own advocate. If you know something is wrong and you firmly believe that there is a diagnosis for what is ailing you, fight with the doctors if you have to. If that doesn’t work, find another doctor. Keep looking for a doctor until you find one who believes you.

I hope this helps some of you who might be experiencing this. It is a rare disorder but it is a disorder and not a psychiatric issue.

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