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A Visit to My MS Neurologist

If you have MS, your neurologist is probably your MS doctor. Poor bastard.

Meet My Doctor

I’ve had the same neurologist since before my diagnosis. Let’s call him Dr. M. It was only by the luck of the draw that I ended up seeing him 17 years ago when I had a little hitch in my step—more evidence of my charmed existence. Other than this annoying little chronic disease, good fortune has rained down on me over and over again.

For the first 8 to 10 years, Dr. M and I were hyperactive: trying one treatment after another, fighting with the insurance company for reimbursement of off-label drugs, and discussing potential treatments still in the development pipeline. He supported all of my Hail Marys in any way he could.

Ours has never been a relationship where I make an appointment with him to find out how I’m doing. I go there to tell him how I’m doing. Sure, he gives me a cursory exam now and then, and we’ve done a few MRIs over the years, but not so much lately. I have advanced primary progressive multiple sclerosis, and we both know there’s only so much that can be done for me.

To date, no treatments have ever been approved by the FDA for PPMS. Around the end of this year, however, we are expecting a drug called Ocrelizumab to be the first. Dr. M and I are cautiously pessimistic. I’ll probably give it a try, but there is evidence that it works best on people who are younger and less disabled than I am.

So what do we talk about once or twice a year when I visit my neurologist, like I did on Monday of this week? It’s about a 50-50 split between medical discussions and general bullshitting. General bullshitting consists of catching up on one another’s family life, complaining about getting old, complaining about the cost of raising children, and complaining about politics (we tend to have the same political slants, so that dominated this week’s visit).

What Should We Expect From Our Doctors?

I enjoy my appointments with Dr. M. I appreciate how he listens, how supportive he is, and how he gives such solid advice. Most of all, I appreciate how he doesn’t sugarcoat anything. That’s not what I need from my doctor.

Do you have a positive relationship with the most important doctors in your life? If not, maybe it’s time to consider a change.

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My MS Symptom of the Week – Spasticity

“I can feel it building…oh yes…please don’t stop…this is going to be so good…here it comes…hold on baby…OH MY GOD,” I thought to myself. Then I let it fly, “Achoo!!!”

“Gesundheit,” said Kim.

“Thank you,” I replied.

What? I can’t believe you thought I was going there.

Everyone is familiar with that feeling leading up to a sneeze. The urge builds and builds, and the last thing you want to happen is for it to fizzle out before you detonate. The sneeze itself is such a relief. It’s like a scaled-down version of that thing that mommies and daddies do under the covers (the government blog sensors made me describe it that way).

Spasticity, my MS symptom of the week, feels like a sneeze as it builds and builds. And, like a sneeze, it feels so much better when I succumb to it.

“Mitch, what is spasticity?”

I’m so glad you asked.

The National Multiple Sclerosis Society describes it this way: “Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS.”

I would further describe my particular variety of spasticity this way. Think about how it feels when you wake up in the morning and have an urge to stretch, except that my stretch is very powerful (proving that the disease is in my nerves not my muscles). I get this spastic feeling frequently now, in both my legs and my arms.

I first experienced episodes of spasticity in the winter of 2003, only eighteen months after my diagnosis (and blogged about it here). I was walking around the streets of Nashville, Tennessee with a client. It was a cold night, and that triggered stiffness in my legs that even my companion could notice. It was almost like I was goose step marching. For the next ten years or so I experienced slowly increasing levels of spasticity, but it didn’t cause any difficulties in my life. It was just an interesting phenomena.

In the last six months or so, however, my spasticity has become much more frequent, and so much more intense, especially at night. It’s affecting my ability to sleep, and it’s doing another strange thing too. After so many years of transferring myself into and out of my wheelchair, bed, and toilet, I developed some sort of a strain in my left wrist. Now, I can’t use my left arm to help with transfers, so I’m not attempting any manual transfers at all. I’ve got an appointment scheduled with an orthopedic specialist, and we’ll see what he says. But the problem is that I have a lot of spasticity in my left arm, and I often put that left wrist through powerful, painful contortions. I think this spastic activity is preventing my wrist from healing. I’m even wearing a wrist brace at night, when the most spasticity occurs, but I still experience significant pain in my wrist.

For many years I’ve taken a moderate dose of a drug called baclofen, a muscle relaxant and the most commonly prescribed treatment for spasticity. I recently increased that dosage to a relatively high 80 mg per day. The problem is that these higher doses of baclofen cause overall muscle weakness and general fatigue, rather unpleasant side effects for someone with MS – a disease that already causes muscle weakness and general fatigue.

If I take much more baclofen I may need to go to the next level, which is to have a baclofen pump installed in my abdomen, with a catheter running around my waist into my spinal cord. This is a much more efficient delivery method for baclofen, without the nasty side effects. But I’m not excited about having a pump installed in my abdomen and having a permanent opening in my spinal cord. So I will put that off for as long as I can.

Spasticity – another wonderful symptom courtesy of my favorite disease, multiple sclerosis.