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Friday, February 25, 2011

Frozen in Mind

Well, I feel as though I am frozen in mind as I wait for the tests to come back. Now that they are completed, I have to be patient. My appointment isn't until March 14th and unless they see a real need (read emergency) to call me in earlier, then I have to wait for that appointment. It would be easier if I felt ANY better, but I don't.

This is the longest and most consistent flare I have ever had. Well, at least that my brain fogged mind can remember. Usually I may have a flare stick around for a few weeks, but during it many sympathies come and go. A few may stay, but MS is constantly changing with me.

Last Summer, because the heat was high all season long, I had a 3 month long flare. During the Summer, I did have days where I felt better than others. This Winter flare is different. The creeping numbness from my toes to my mid-thigh is holding on. The tremors have subsided and only come out at certain times of the day, like when I am overtired or I am overdoing things. This numbness hangs on. That is a little scary to me.

Is it going to stay on as a permanent symptom? Is it going to get worse and lead to more walking aides like a walker or a wheelchair? Will it improve once they figure out what's wrong and have a solution to fix it? Can they even fix it? So many questions.

I should explain for those of you who don't have MS that during a flare up or an exacerbation of MS there are lesions in an MS brain that have become "active" or are in an inflammation period. When they prescribe IV steroids the idea is to "calm" or lessen the inflammation of the lesions. Once a flare-up or exacerbation has passed the lesions will either remain in a calmer state or disappear entirely. The ones that go away usually take a symptom with them. The ones that remain can either hold a symptom that will come or go or it will hold a symptom that will mean permanent damage. For example: My tremors seem to come & go. That has remained since I began having symptoms. Stuttering & slurring have come & gone for me, but less often which indicates, to me, that those lesions heal and may comeback later. Some MS patients may find themselves in a wheelchair after a flare-up or exacerbation. I know some people who were wheelchair bound for 6 months and then eventually regain full use of their legs like nothing ever happened. The ones who remain permanently wheelchair bound would indicate a lesion that has remained and has so much Myelin damage that it won't repair itself. Neuros & researchers don't know why some lesions heal & some others do not. Hopefully, some day they will. (Note: Myelin is the protective covering around your nerves.. When it becomes damaged the signals from your nerves to your brain get all mixed up or don't send the right message or any message at all)

So here I wait for results. Still having trouble walking and really tired. I did got to be fitted for the AFO or leg brace for my right foot. I had to reschedule because apparently I haven't met my $500 deductible for the year yet and they need that just to start. I asked how much the device is and was told $750. After I meet my deductible I have to pay 20% of the $750. $150 is more manageable than $750 so we are waiting. Frankly, I usually meet my deductible in February or March, so I am not worried. After all these tests get submitted to the insurance company, I am sure the deductible will be met and I can move up my appointment. I have waited this long, right?

Speaking of waiting...I also have to wait for the Pain Management Specialist as well. He is apparently booked until mid-April. Both of them were. So I will see him on April 19, 2011. Again, waited this long... I really am interested to see what he has to say. I have been on Darvocet for many years for Fibromyalgia. Until a year ago, I rarely took them unless I was in a lot of pain for a flare in the Fibromyalgia. My prescription typically expired before I had even gotten half way through the 1st bottle. Last year when my MS really flared up with unbearable pain that changed. I began taking them more often. As always they only took the edge off, but never really took the pain away. Since the FDA recalled Darvocet, I had to try something else. Now I am on Tramadol. It does the same as the Darvocet, takes off the edge, but not all the pain is gone. Maybe this Pain Management guy will be able to find a better solution for me. It's his job, right? Who knows what will happen? I am dealing with nerve pain, muscle pain, and now headaches as they are becoming more common too.

I will keep you posted on what I find out. Meanwhile as I remain frozen in my mind & wait for some kind of change I will move forward & smile as I count my blessings in my beautiful life. Remembering my blessings always helps to put things into perspective. Love to you all! Be well and count your own blessings!

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