Research

There are so many treatments available for MS patients. Both traditional and "non-traditional". The most difficult decision for each of us is choosing the treatment that is best for us. What works for one, may not for another. Decisions are made based on lifestyle, quality of life, side effects and financial considerations. What is an important factor for one person isn't for another. Opinions often vary greatly from patient to patient and physician to physician. I tried the Dynatron machine again. Twice yesterday. The first time I was only able to last 29 seconds on it, and the second 34 seconds. Of course, this, as all other treatments, isn't meant to be a "miracle cure" and is something that must be utilized over time. The challenge is, since it is a treatment not covered by insurance. Is this something I will follow up with. It would require a trip out of state, treatment, testing, airfare, hotel etc, as well as purchasing the machine. All out of pocket since, even thought he machine IS FDA approved, it's not a "traditional" MS treatment. Therefore, not a covered benefit. How frustrating is that. They will pay the amazing price the pharmacy gets for my Rebif injections every month. (Not to mention all the other meds). Yet, won't even consider a treatment, that if it works, would save them almost 20,000 a year for my injections alone. Kinda like the insurance mindset of "we won't pay for a weight loss program, but we'll pay for the heart cath and open heart surgery after you have the heart attack that losing weight most likely would have prevented. Geesh. I'll be trying the machine a few more times over the next few days. I see the neurologist on Tuesday and I will be discussing the Dynatron therapy along with other options. This has been a tough summer with exacerbation's, so I'm anxious to hear what he will have to say. I'll also be resuming my physical theraphy schedule of 3 times per week, and talking to the neurologist about adding occupational theraphy as well. Trying to keep one step ahead of MS tends to be hard work when it rears it's head!

Trying New Things

I didn't post yesterday. I enjoyed an hour massage, did some shopping, had dinner with family then tried a new treatment for MS. I'm not sure how it all really works yet. I'll post all the information as I learn it. Basically, your hooked up to a machine (Dynatron STS) that uses electrical impulses at acupuncture and acupressure points to stimulate the nerves to release neuropeptides. Neuropeptides are chemicals responsible for a lot of neurologically related functions. So, the theory is that if you can induce the body to make more of these neuropeptides and increase the circulation of oxygen in the blood (the machine also works to improve circulation and with MS improved circulation will only help myelin sheaths) you will see a decrease in pain and an improvement in neurological function. There are very specific points at which the electrodes and magnets are placed. You are then connected to a machine and the frequency, pulse rate, etc. are set. I lasted about a minute (the goal was 7) before we stopped as I started having a weird feeling in my right hand. I'll be trying the machine again tonight along with learning a lot more about how it works and what it does. If you would like more information go to paindefeat.com. It's the web site of the physician, Dr. Rhodes, who developed the machine. He designed the machine for use with patients who suffer from chronic pain disorders (with tremendous success).

"Pretty darn good"

No major episodes of spasicity last night. Amazing what a difference a night without them makes. Especially after a run of 4 nights in a row. Slept well. Woke up thankful that I actually slept and had a pain free night. Of course, my body needed time to recover. I woke feeling energetic and rested, then TWF arrived with lunch. It was all I could so to stay awake. So, I gave in and decided to take a nap as soon as lunch was over. I awoke several hours later and was time to get up and dress for dinner! Lasted through dinner (if flourless chocolate cake wasn't on the desert menu I would have passed on desert and went back to bed), barely. Mark brought me back to our room and I'm quickly blogging before turning in for the night. (Mark went back out with the family). Time has taught me not the fight the TWF when it hits. Especially after the past week. Sometimes the TWF is simply my bodies way of taking the time it needs to recharge and recover. While I'm tired, I feel pretty darn good for a change. I was beginning to forget what "pretty darn good" feels like!

Looking on the bright side.

Another pain filled evening last night with spasticity. At least today is another day and, for the moment, the spasms are finished. Of course, from the waist down my body feels like someone beat the H*&^ out of me. You know. If we could figure out a way to have "gentle" spasicity for about 30 minutes per day on all major muscle groups, we'd all be in great shape with wonderful "hard" bodies, and never have to hit the gym. Gee you'd think there would be SOME benefit for all the spams and pain!

Another wonderful side benefit to all the steroids of late. My hair is falling out! In handfuls. Well, I always wanted to be able to change my look on a daily basis. This is a wonderful opportunity to try out wig wearing. Hmm....today brunette bob.......tomorrow blonde with flowing locks. Hey, you gotta look on the bright side of everything!

Another challenge

Been a tough few days with the muscle spasticity. All my "usual" symptoms seem worse lately and the muscle spasticity is not different. Thankfully, the muscle spasticity isn't a symptom I have frequently. Usually. Last nights episodes lasted longer than usual and well into mid morning today. During and following the muscle spasticity I had a new symptom. One I had never experienced before. Hopefully, an isolated incident. It's now gone away, although it took about 4 hours for it to resolve. Following a series of particularly bad spasms that primarily effected my left foot, my left foot from the knee down went completely numb. When it actually happened, I wasn't complaining. It was after I uttered a particularly fervent pray to God to "PLEASE STOP THE PAIN". That the leg went numb. The pain simply went away. At first I just thought the spasm had suddenly stopped. Until I looked at my foot. The tendons on the foot were still pronounced, my big toe was still drawn to the right and my other toes were still spread and drawing towards the left. Clearly the muscles were still spasming quite intensely. However, I felt NOTHING. I asked Mark to rub my foot. He did, and while I felt him touching the skin I couldn't feel anything below the skin. My foot was numb! I asked Mark to rub HARD. (Normally during a spasm I can't stand ANY pressure (massaging or rubbing) on the muscle. It makes the pain even worse. Mark said he could feel the muscle balled up tight. He started doing deep massage to see if he could get it to ease up. I didn't feel a thing. We then realized the numbness extended all the way up my leg to the knee. A mixed blessing. Frankly, I was so relieved the pain had stopped that at that point I didn't care that my leg went numb. It wasn't until I tried to walk on the leg and realized I couldn't that I got more than just a bit apprehensive. No way was I going to panic. I figured I'd just rest and see what happened. It took about an hour before I could walk on the leg (relying totally on the cane). Now, 7 hours later all the feeling is back and the walking is better. Wouldn't dream of attempting to walk without the cane though. To be honest, while the "symptom" is a bit disconcerting, I'm not freaked out about it. It had never happened before. I was actually RELIEVED it happened as the pain stopped, and heck I PRAYED for the pain to stop. Time will tell whether this was a one time answer to an immediate prayer, or this is a new symptom and an indicator of progression. I see the Neurologist a week from Tuesday so I'm sure he will have some answers for me. Time goes on and the journey continues.

MS and Muscle Spasticity

This ia what muscle spasticity looks like.

As I'm already blogging before 6 am on a morning that did NOT require me to be up all freaking night for a job related issue, it can mean only one thing. MS strikes again. I'm irritable, tired, frustrated, sore and pissed off. That being said, I'll move on. No two people are effected by MS in the same way. Sure, the actual disease process is the same, but the symptoms and severity of the disease can vary greatly patient to patient. Some MSers have vision issues, some don't. Some lose their hearing, some don't. The same with mobility issues, bladder and bowel issues etc. It depends on where the location of each person's lesions are. The location of the lesions determines which of the wonderful (notice the sarcastic pissed off wit this morning) myriad of MS symptoms an MSer will have. Generally speaking, I've been pretty lucky. Other than my hearing and a very slow progression of mobility issues, MS has been "kinder and gentler" than it could have been. However, for me, there is one symptom that I battle that takes every bit of strength I have to fight when it flares. Unfortunately it started raising it's ugly head three days ago and hit full force last night. Muscle spasticity. What's that you ask? In basic medical terms: it's the involuntary contractions of muscles and increased muscle tension. In MY terms: Muscle Spasticity is an unbelievably PAINFUL several days (for me) of such intense muscle cramping in my legs that I can't walk, straighten my legs during the 15-20 minute severe attack which occurs about every half hour for hours on end. This in turn means that in about an hour I get freaking 20-30 minutes of "pain free" time in which I stop crying, hobble to the bathroom, crawl back to bed a pray to God to stop the cycle. This morning the muscles are continuing to spasm non-stop. I've taken everything I can possibly take for the spasms. At this point I think the actual muscles are so exhausted THEY don't have enough energy left to fully contract anymore. They are simply spasming. Kinda bizarre to watch. I can actually see the individual muscles contracting and relaxing under my skin. (Think back to the scene in Alien, you know the one). They are no longer painful, just annoying. (THANK GOD). For the past two days the spasms were limited to all the muscles below my knees. Feet, calf's, shins etc. Last night they moved up to involve both legs entirely. Including the hips. That's the first time it moved so high. I've had them reach the quadricep muscles on the thighs before, but never the hips. Ahhhh. A new experience. Gee.....one I could EASILY have done without! . It is what it is. Hopefully, the twitching my muscles continue to do, even as I type, will continue to wind down and the pain is over....for now. Past experience has taught me it will take days to recover. My legs will be painful, walking will be more of a challenge, as will balance. At least I've been through this enough times to know what to expect. I just pray that the cycle doesn't continue tonight. I also pray that this isn't the beginning of yet another exacerbation. If so, it will be my third since mid June. I'm not up to round three of steroid in 6 week. So, I'll march forward. "This too shall pass". I'll take it easy this morning. Trying to rest. I'll set my alarm for 8 and make myself get up and start my day. I'll take my time, use my cane and get things done. Just another day in the journey with MS.