Monday, May 4, 2009

Free For All Fridays: Questions Answered!

I've decided that I'm not going to push myself to update on the weekend. I'm sorry to disappoint, but the pressure is too much for me. So, FFAF questions will be answered on Monday. Yay!

OK, I'm going to focus now. There were two questions left on Friday. The first was anonymous: What are your symptoms and how severe are they?

Good question. My symptoms vary each day and throughout the day. They include: burning-achey pain in my limbs (especially my legs), nausea, dizziness, fatigue, numbness, pins and needles, weakness (especially in my limbs), headache, loss of bladder control, spasticity, insomnia, constipation, blurry vision, acute vibrating sensation all over my body, and poor muscle control. Some of the worst symptoms are things that happen in my head, they are more feelings I get and are difficult to describe. For example, I'll feel like I am sitting next to myself. It's a weird light-headed/confusion/spatial distortion sensation. I like to call it "swimming." See, I don't know how to swim, so when I'm in the water I have a hard time controlling my body, making precise movements, and end up floating. That feeling comes on suddenly and can last for hours or days. Another example of these weird sensations is what I call "brain rattling." After walking a block or two, I start to feel like my brain is rattling against the back of my skull. My brain isn't actually moving, but that symptom has scared me for years.

The severity of these symptoms also varies greatly throughout the day. I've started describing my symptoms in 5 categories (pain, neurological, stress, fatigue, and mobility) on a scale of 1-10 with 10 being the worst. It's all really subjective, but has made it easier for my wife to quickly gauge how I'm doing when we're not together. Typically, 6 and below are manageable levels and don't effect my ability to carry out daily life, but all 6s make a difficult day. Currently, my levels are p-7, n-5, s-4, f-8/9, m-7. I'm having a terrible time sleeping, so I haven't been able to fully rest and rejuvenate. If I stay in bed today, take a nap, and do some stretching, I should be able to get my pain, fatigue, and mobility in check. Since December, I would describe my levels as being moderately high, but I'm learning to manage my symptoms and keep everything at a manageable level. Some symptoms, like the brain-rattling, are situational, but most are always present at varying degrees.

The second question is from Christian: What is your usual course of treatment for MS?

I wasn't sure if Christian wanted to know how I treat my MS or how MS is treated. So, I'm going to try to answer both ways. Let me first say that there is nothing "usual" about MS. Everyone exhibits their symptoms differently, manage symptoms differently, and choose (or not choose) to do one of the injectable treatments. I could try to detail all of the ways that people can treat their MS, but the National MS Society has done a great job here and I really don't need to reinvent the wheel.

When it comes to my personal methods for treating my MS, I have focused on resting, exercising, eating (more than one meal a day), taking a load of vitamins (vitamin D, fish oils, iron, calcium, vitamin C, vitamin B12), I take a little blue pill called Oxybutinin for bladder control several times a day as needed, gabapentin for control of nerve pain as needed, and until last week I was also doing a weekly injection of Avonex, a disease modifying drug designed to slow down the progression of the disease. This combination (minus the
Avonex) has been working pretty well for me. Even though I don't feel as good as I did before my last exacerbation in December, I do feel stronger than I did before the diagnosis.

Oh, it just occurred to me that you may be wondering about a cure for MS. Currently, there is no cure for MS, so we focus on managing symptoms and doing what we can to slow down the disease and prolong mobility.

Phew, I hope that answered your questions without too much confusion. I've had about 4 hours of sleep, but wanted to get this done before sleeping all day and not getting to it at all (like the MS walk which I haven't forgotten about). Thank you for your questions and remember, you can comment on any post, you don't have to wait until Friday to comment.

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