I Will Sing A New Song

My first visit with my new MS specialist went so well that it was actually somewhat moving. I feel as if I’m in good, compassionate, and empathic hands there. This doctor has a unique understanding of what it means to have MS, and it was nothing short of wonderful to have his perspective.

Highlights included:

-Getting some new, much smaller needles for my medication. This has given me the confidence to possibly attempt to administer my own shots. I tried one tonight, and they hardly feel like anything.

-Hearing the story of how he came to be a doctor, and how he came to treat MS.

-Being treated like a human being by him and his very kind staff.

-Waiting very little.

-Getting a tour of the facility from the doctor himself.

-Getting new hope for a possible treatment of one of my symptoms.

I’m thrilled.

Needs A Title

I went to look at an MS facility with my folks yesterday. The place was laden with all sorts of rehabilitation gadgets. Despite the fact that this place is very rehab oriented, I think I’ll start going there for care. I don’t yet need rehab, and I truly hope I never will, but the option is both available and extremely convenient.

The receptionist/medical secretary gave us a guided tour of the facility. She was very nice, and spent a good hour showing us around and answering our questions. We ran into one of the research coordinators about half way through, and she joined us for the remainder of the tour. I plan to set up a consultation soon.

It’s strange – for so long I’ve been anything but proactive regarding this disease, and I’ve spent quite a while simply denying that I even have a problem. For some reason this back pain, which may or may not even be a symptom of MS at all, has inspired me to confront the issue a little more thoroughly, both emotionally and logically. I suppose it took extreme physical pain (and the prospect of preventing it) for me to really spend any length of time thinking about the disease and what it means to have it. Still, I don’t want it to define me. For instance, I think I’ve been writing about my possible symptoms, doctor troubles etc. way too much, but it’s been sort of nice to confront it in a public forum. I don’t, however, want it to be the sole subject found in my blog.

On another note, today is the last day of classes! I’m sitting in a classroom, waiting for my adolescent psychology class to begin. It will be my last class of the year. I still have a ton of work to do as far as exams are concerned, but this is the home stretch.

And Another…

I don’t mean to turn this blog into a place where I detail the all the minutiae involved in having MS, but I wanted to share my latest travail, as it’s something that’s been on my mind.

Remember the back spasms I mentioned in an earlier post? They subsided for a while, almost entirely. On Saturday, I was in more pain than I can ever remember experiencing before. The pain dulled all my senses, and I could think of nothing other than somehow relieving it. I probably would have pulled out my hair, strand by strand, if I thought it might diminish the pain in my back.

I would have gone to the emergency room, but Jack felt that they probably wouldn’t give me anything for the pain for fear that I might be an addict of some sort. He was probably right. So I moaned and cried as the unbearable yet nondescript pain ravaged my back.

Anyway, in the morning I felt much better (as per usual). I emailed my doctor, for whom I’ve been waiting patiently to get back to me regarding the results of my MRI. She emailed me back, saying that she hadn’t looked at my MRI, but that the pain I have been experiencing isn’t “typical” for MS. She then suggested that I see my primary care physician and asked if I had a kidney stone.

Her response made me angry, but it also made me feel utterly helpless. This is by no means the first time that she has refused to investigate a possible symptom. The other major problem she refuses to address are my urinary symptoms, which are extremely typical in MS. She insisted that I merely have a small bladder. At her suggestion, I saw a urologist, he ran some tests (which were painful and humiliating, I might add), and he concluded that MS was to blame and directed me right back her way.

So where has all this left me? Well, I’m totally willing to accept that this isn’t MS, but I think it’s her duty to investigate it more thoroughly. What are the odds, for instance, that it’s a nerve problem unrelated to MS? I think they’re fairly slim. I’m young and otherwise healthy. Also, my disease has taken an incredibly atypical course (even when considering the fact that MS is a disease with incredibly varied symptoms), and she seems to conveniently forget this.

My solution is to search high and low for a new doctor. I want someone who will listen, and give pertinent suggestions. And contrary to what this blog post might suggest, I’m actually quite a passive patient. I yield to doctor’s orders, and, in the 4 years I’ve been seeing her, this is the first problem for which I’ve used her personal email. I have relatively few problems compared to other patients, so I don’t think she’d have reason to believe that I’m a hypochondriac with a convenient excuse for all my many ailments. No, I think she’s too busy, plain and simple. At this point, it would be my pleasure to lighten her load.

Sorry to complain so bitterly again. I’ll try to write less about all this in the future. In lighter and happier news, I watched South Park while I was in pain, and it kinda sorta helped take my mind off it. Thanks, South Park.

To The Neurologists:

Two nights ago, I had kind of a weird experience. I got up to go to the bathroom, and somehow became aware that my left leg was extremely weak. I tried walking on it, and I fell.

Jack woke up, alarmed by the thump, and asked what was wrong. Being completely out of it and irrational, I lied to him and said, “Oh, I tripped. I just tripped on something. Go back to sleep.” I suppose I didn’t want him to worry, but I’m still confused as to why I was so desperate to hide the truth.

It took me a minute, but I finally gathered the strength to hoist myself up again. My leg was still weak, and I remember swinging it around, like it was dead weight. I got to the bathroom, and my trip back to bed was almost entirely normal.

My leg is sore. I hadn’t noticed any soreness yesterday, but now I can feel a distinct twinge in my left thigh. It’s not horribly painful or anything, but it does feel a little like I was running sprints on one leg last night.

Have any sufferers of MS experienced this? If you were to share any insight into this weird little spell, I’d be grateful.

Chronic Diseases Suck

I’ve always tried to maintain a positive attitude about having multiple sclerosis. After all, it could be vastly worse. I could have any number of more serious neurological conditions. Hell, even my particular case of MS could be worse. It isn’t life threatening (in the sense that it won’t kill you, though it has been known to suck the fun out of things), I haven’t lost any motor or cognitive function (at least, I hope that’s the case), and I lead something that resembles a normal life.

Lately, though, I’ve been having some rather excruciating muscle spasms in my back. They always occur in the same place, and they are exclusively nocturnal. I haven’t had a back injury, nor do I suspect any outside agent of causing them. Sometimes they merely wake me up in the middle of the night, keeping me awake and annoyed for several hours. Sometimes the pain is so horrible that I consider going to the emergency room. No over-the-counter drug even make a dent in the pain, and massages only exacerbate it.

By morning (say, 6 am) the spasms are gone, but I’m usually very, very sore. I am spasm free for the rest of the day but, by 8 or so at night, they begin again.

It was almost exactly a year ago that I was numb in my left side from the waist down. That was scary, but this is painful. And frankly, my good attitude is wearing a little thin. I’m tired, I’m in pain, I’m missing classes, and I’m just a bit fed up.

I try not to complain too much, for all of the reasons I mentioned above, but also because it’s really not very exciting to listen (or read about) people’s medical woes, and it also tends to depress people. When I went to the hospital for steroid treatments a few years ago, the nurses always shook their head with sadness that “someone so young” had to put up with the problems that accompany multiple sclerosis.

The fact is, the younger you are when you have your first attack (within the parameters of adulthood) the more smoothly your disease is predicted to progress. You’ll very likely have a mild-ish, relapsing-remitting form of the disease. I for one am thankful to have had my first attack at 18 (although I wasn’t even on medication until 20, and wasn’t officially diagnosed until 23). Still, it’s frustrating to experience medical issues that shouldn’t befall you for at least another 40 years.

Anyway, I’ve often been tight lipped about this condition. To be frank, I don’t like to think about the fact that I have it. I’m at a peak of frustration right now, and it’s hard to remain silent, or keep a good attitude.

For what it’s worth, I’m sorry to all those people who have lost motor function, or who experience symptoms worse than mine. I know, for your sake, that I should be thankful for what I have. And I am. But I’m also tired, in pain, and sick of this damn disease.