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Living with Multiple Sclerosis
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After giving thought to this for some time, I have decided to ask you to come walk with me as I open a door I have kept closed to you. This is going to be difficult, but it is time I do share more of what the MonSter has done to me. Step slowly into my life now but leave any pity you have behind for I am not looking for that nor do I want nor need that save those emotions for others who look for and want it…..Make sure you have your favorite beverage and tissues with you and you are settled in a comfortable position…oh and with an empty bladder……here goes- I have waited and teased as long as I can….
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My initial symptoms were speech and leg control. I was able to think about what I wanted to say but was unable to speak complete sentences. The words were not slurred but rather not connected. There was a much higher than normal level of fatigue. It was most notable in controlling my legs when walking.
Steroid treatments had an immediate effect. My speech control was almost back to normal in two days. Speech was normal within a week. Fatigue level dropped but my normal high level from steroids did not take place. Walking strength never did return.
After a month, speech and thinking are normal. Physical strength level did not return to pre-exacerbation level. Body strength, leg endurancein right leg, seems to have leveled out at 65-70% of prior ability.
A noticed change in energy. Cylert had already become necessary twice daily to function for 12-14 hours. Now a single tablet affects level for only 3-4 hours. This is most noticeable in the mornings around 10-11 AM. Neck, shoulders, arms and legs get weak. Mental alertness seems in tact but functions such as speaking or moving gets fuzzy and not worth the effort. Thirty minutes after another 1/2 tablet of Cylert and I am able to go until my afternoon dosage.
There is a similar effect in the evenings. At 6-7 PM my energy level is fine and activity normal. By 8-9 PM my level starts to drop rapidly. My ability to function or interact has ended. I have not tried another 1/2 tablet booster in fear of messing up my sleeping habits. Napping in the afternoon, as on weekends, seems to be needed but has not altered the pattern.
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I have pain on my left side extremities. it is so severe sometimes that it wakes me up during the nite. Pain medication does not ease it at all. When stressed it becomes almost unbearable.
I have the numbness, tingling, falling, left sided weakness, dropping things, electric shock feelings down the legs.
The strangest symptom I have which is very new is that it feels like I don't have any feet
I have stinging sensations in my right foot
My feet feel like they're freezer burned all the time.
My right eye has a persistant STABBING right in the center. No burning sensation, just a constant stab ache then pain
My left side alternately sleeps, tingles or burns.
I mix words up or stop dead in the middle of a sentence and can't remember what in the world I was talking about.
I was watching a movie with my PCA (Personnel Care Attendent) when suddenly I began shaking uncontrollably & I literally felt as if I were freezing to death! My teeth were even chattering.
I tend to get a vibration right down my spine when I nod my head. Problem is my legs go wobbly when I do it.
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As time passed, I saw my friends falling by the wayside, because they did not understand what I was going through. At times I knew my family did not even understand. The medications did not seem to help and I was not getting any better, so I became frustrated. I desperately wanted to escape this horrific illness, which had debilitated my entire body. I remained determined not to give up on my hopes and goals so I went to doctor Broz in W. Brookfield who specializes in treating with Herbs, in hopes of finding the answer.
So I am still hoping and still fighting! I have tried many medications, vitamin and herb, with little to no relief. I have lost friends, respect and dignity from others, while losing my independence, career, and ability to have children, loss of hobbies, recreational activities and even the ability to care for my house on a daily basis. I not only mourn those losses, but it also breaks my heart that I can no longer clean my toilet, dust my furniture or just stop by the grocery store for a few items, without collapsing and paying dearly for days or even weeks!
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Today I may say my ego strength is very healthy and I have found a way to say Life Is Simply Good through the help of my Power wheelchair and my dear PCA's and Doctor Broz, and my friends in MS WORLD who encouraged me to view myself differently and enjoy each day….. That is what a good friends of PCA's and the MS World can and does for you…walks in your life when you need them most, recognizes your needs, and encourages you to do the same, steps back but never walks away….Thank you for being a friend….a true friend….
Now go be a true friend to your friends….call some one you have not talked with but have been thinking about…..send a card to someone you want to cheer up just to say hi……just be that special friend today and every day. For life is short, Make the most of it!
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