In Which I Am Beat

I've written and consequently deleted a couple different drafts of this post. I'm frustrated with the project of writing this because I don't want to come off as being too whiney, too depressing, or too much like I am seeking out your pity. You, my readers, have been amazingly supportive of me during this time, even when I haven't given you any details about the more recent developments with my medical situation. And still, as difficult as it is to write about a negative situation pertaining to oneself without sounding like you're throwing yourself a pity party, I am going to try my damnedest to. Because I want to write about it, because I need to write about it, and because I don't want to feel like I'm taking advantage of your kindness and support.

Now, to finally get this damn thing started...

The reason for all of my concern and stress about this appointment is because there is speculation that I may have Multiple Sclerosis. There are a couple of different reasons why this is now on my radar, the first being the diagnosis of an involuntary movement disorder (of the legs and arms, not bowels) that I received in January.

To explain the other reasons, you'll first need to take look at the list of symptoms laid out on the National MS Society website. If you'd prefer not to click away, here's the rundown of the symptoms, pretty much verbatim, from the NMSS site.

Most Common Symptoms of MS:

• Fatigue
• Numbness
• Walking (gait), balance and coordination problems
• Bladder dysfunction
• Bowel dysfunction
• Vision problems
• Dizziness and vertigo
• Pain
• Sexual dysfunction
• Cognitive changes
• Emotional changes
• Depression
• Spasticity (referring to involuntary movements)

Less Common Symptoms of MS:

• Speech disorders
• Swallowing problems
• Headaches
• Hearing loss
• Seizures
• Tremors
• Respiration/Breathing problems
• Itching

As you can see, there are a broad range of symptoms involving many different parts and aspects of the body. I think this goes without saying that you can have a majority of these symptoms and still not have MS. There are other things that one must have and certain criteria one must meet to go about getting a diagnosis of MS. In regards to myself, though, I can say without any hesitation that I have 12 out of the 13 most common symptoms, and 4 out of the 8 least common symptoms. I am not being a hypochondriac by thinking that I may have MS because I also have another one of the key indicators for it.

A major part of being diagnosed with MS is having lesions in the brain, which are visible with an MRI scan. Most of you will remember that I do have lesions in my brain, and that is something we've known about since pretty much the start of all of this. (If you are new or have forgotten about the lesions I am referring to, and you can read about here).

You can imagine how bleak this looked to me, knowing all that I have going on and what it all seems to point to. I know that having MS is not a death sentence, but it definitely is not something (obviously) that I want to have. The possibility of losing the ability to speak, or to walk, or losing my vision or hearing... it scared me. Thinking about it was the cause of many sleepless nights.

So with all of that said, here we are now, at my appointment yesterday. For the past couple of months I have been doing research about this, compiling notes and tracking the onset and progression of all my symptoms so I can present my case to my neurologist. My mindset going into the appointment was simple:

Regardless if I do or do not end up having Multiple Sclerosis, I want to know, and I want my neurologist to prove it to me. MRIs, spinal taps, whatever tests he wants to run, I'll do them. I just need to know.

After waiting an hour past my appointment time to actually see my doctor, I finally am sitting face to face with him. He listens attentively as I run down the shopping list of symptoms that I have, and waits for me to finish. He hesitates for a second after I'm done speaking and tells me, definitively, that I do not have MS.

You'd think I would be relieved, but I was exactly the opposite. I was upset. He brushed it off so quickly, like it was an absurdity, especially after I practically spelled it out for him. I know that he is the one with the medical degree, but how could I present all these symptoms that have all gotten progressively worse in ways that exactly fit the pattern for MS, and not have it?

It took him to explain it in a way that I understood, but eventually I saw his point.

He reminded me that I was informally diagnosed with sleep apnea back in January. Despite the fact that I barely slept during the sleep study I endured in September last year, they were able to get enough data to lean towards that diagnosis. He theorized that because I have been getting such poor sleep over the past two years, as attributed both to the suspected sleep apnea and the leg/arm movements I have while asleep, that a majority of the other symptoms I have may be caused and/or magnified by sheer sleep deprivation.

He also said that there is no way that we can look into a condition as serious as MS (which isn't still out of the picture entirely) without first trying to fix the sleep problem, thus clearing up any symptoms that are masking the true problem(s), and then see what remains.

When the topic of sleep apnea came up at my last appointment in January, I was pretty hesitant to get fitted for a CPAP machine right away because I wasn't entirely sure that I did indeed have sleep apnea. I am still apprehensive about the diagnosis and all, and I have my reasons as to why exactly, but this post is long enough already so I'm not going to go into any detail about it. However, if this is the next step I have to take, I trust my doctors judgement and I'll go along with it.

So, that is the next step in this on-going saga. I'm still concerned about the possibility of MS, but I'm comforted in the fact that for now, it's not in the foreground of the investigation. As far as getting fitted for the CPAP machine, I'll be contacting my PCP on Monday to see about getting that ball rolling up here in Maine.

We'll see what happens from there.