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> Multiple Sclerosis, How do you or your family deal with it?
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gwenlee 
Posted: 03-Mar-2008, 07:59 PM
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As many of you know I have a daughter with Multiple Sclerosis. She was diagnosis with it at 17, right before her senior year in high school. This came to us out of left field. At that time no one heard of a teen being diagnosed with Multiple Sclerosis. My daughter had been healthy. She was varsity softball, and tennis and she rode horses. So you can imagine how shocked we were that she had scars on the brain. The disease had been there awhile. Her prognosis was poor due to the disease being through out her brain and spine. She went through a very aggressive treatment of chemotherapy, steroid, and Avonex. She had a very positive response. The disease went into an almost 7 year remission. But the beast is back with a vengeance. It was somewhat shy in the first half of 2007. Her doctor placed her on Tysabri and that gave the beast the an opportunity to ravage her. Since July of 2007 she walks with assistance of some kind 80% of the time, and has developed seizures. She is off Tysabri and back on chemo, steroids, and Avonex.

This is a horrible disease and so unpredictable. Perhaps if you or someone you know has MS you can tell how they are dealing with the disease and what kind of treatment they are pursuing. I would even like to know how family and friends deal with the disease.

By the way March if MS awareness month.
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valpal59 
Posted: 04-Mar-2008, 11:57 AM
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My sister-n-law had MS. She was not diagnosed with it until she was 25. It took the doctors 5 years to finally diagnose it. She passed away 5 years ago at age 53. When I met her 29 years ago she was doing well. She was on steroids then. Plus alot of other medications. She would do good until she got over active then she would go downhill, but she would always bounce back. When she moved to Ohio with her husband (that is where he was from) the doctors took her off all of the medication that she had been on here and she really went downhill. They told her the medicines she was on was not good for her. She was never able to walk again after that. She became bedridden 2 years before she passed away. At that time Home Health was only allowed to come to her house so many hours a week. So it fell to me to go over everyday on my lunch hour to clean around her cathater and to apply the medication to her bed sores. ( Everyone else would get sick when they tried to do it.)
Gwenlee, As far as dealing with it, everyone did really well. Juanita handled the disease well most of the time. On the days she didn't, you had to have a tough hide and just let everything she said roll off. The rest of us would go home and cry till we couldn't cry anymore. I lost alot of my faith during this period. I couldn't and still can't understand why people have to suffer so much.
You and your family are in my thoughts and prayers.


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ctbard 
Posted: 04-Mar-2008, 12:43 PM
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I have a sister in law with MS, she's about 53, she was diagnosed when she was 18 or 19, she did really well with her med's til about 10 years ago, she does well for awhile, then she'll have an "episode", after that she'll get better, but never regain the strength she had before, at this point she'll sometimes walks with a limp, and she's also very shakey, i dont know if thats from the meds or what though, she's on a med now that gives her 3 bad days to 4 good ones, I'm not sure what it is, if I remember correctly it's called, and I'm sure the spelling is way off, Anti-fouron?? she also has eye problems with it,The MS that is.


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gwenlee 
Posted: 04-Mar-2008, 01:02 PM
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Val-you were a true friend. Usually people who have MS don't die from the disease but from the complications of MS. That didn't make sense that the doctor took her off her medication. My gosh everthing that is given to a MS patient is "bad for them" My daughter has to have blood work done monthly now but has bee getting it done at least every 6 months.

ctbard- tremors are common in MS pt. I know that there is medication for that but there again it has some bad side effects.

My daughter is having problems with her vision today, and the weakness is still bad. She is on additional steroids plus she gets chemo in 2 weeks. My youngest showed me her sisters web site and her statement for yesteday was "I am tired of living" This is sad.
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ctbard 
Posted: 04-Mar-2008, 01:28 PM
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I'm so sorry that your daughter feels so. It's so very hard when your children are ill, you would so much want to take their pain yourself if you could.
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gwenlee 
Posted: 04-Mar-2008, 01:40 PM
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ctbard I think your sister-in-law might be taking Avonex is it a once a week injection?
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ctbard 
Posted: 04-Mar-2008, 03:59 PM
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Yes, it's a once a week injection, I'll have to find out the name of it next when I speak to her.
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UlsterScotNutt 
Posted: 04-Mar-2008, 05:05 PM
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gwenlee, You and yours are in my prayers. Fred


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gwenlee 
Posted: 04-Mar-2008, 05:51 PM
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Thanks for the prayers, UlsterScotNutt
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valpal59 
Posted: 05-Mar-2008, 11:18 AM
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QUOTE (gwenlee @ 04-Mar-2008, 12:02 PM)


My youngest showed me her sisters web site and her statement for yesteday was "I am tired of living" This is sad.

I am so sorry she is feeling that way. Juanita would get angry when she was feeling that way. Anyone who was around her during those times took the brunt of her anger. Which we all did. All we could do was love her and be there for her.



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gwenlee 
Posted: 05-Mar-2008, 03:36 PM
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Sarah doesn't usually take anything out on anybody. But she does get withdrawn.

She is getting steroids today. I had to start her IV because home health couldn't get it. Oh well I am glad I am a nurse.
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Rindy 
Posted: 05-Mar-2008, 11:15 PM
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Hi..just wanted to let you know I am reading all these stories and my heart goes out to all of you that MS has touched. I don't know much about it but with all of you writing this I am learning so much. Thanks.

Slainte
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valpal59 
Posted: 06-Mar-2008, 03:17 PM
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Juanita was the type of personality that didn't take any crap from anyone and would tell you what she thought,good or bad. I think it would have been harder dealing with everything if she would have become withdrawn.
Gwenlee, I so pray that your daughter will go into remission and be able to enjoy life. hug.gif to you all.
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gwenlee 
Posted: 11-Mar-2008, 12:39 AM
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Thanks Val.

My daughter went to the eye doctor and it appears that she is developing glaucoma as a results of years of steroids. The doctor had noticed some "cupping" what ever that mean in 2006 but didn't want to alarm us. But now it is worse with some increased pressure. So she will see a neuro ophthalmologist at the end of April.

I guess when it rains it pours.
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Rindy 
Posted: 23-Mar-2008, 08:51 PM
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Gwenlee, I don't know if this will be of any help but I work for a optometrist and did the pressure machines and all the pretesting. Technology now always offers help. Don't loose hope. Hang in there. Your all in my thoughts and prayers. Please keep us informed. (((Hugs)))

Slainte

What is optic nerve cupping?

The optic nerve carries impulses for sight from the retina in the eye to the brain. It is composed of millions of retinal nerve fibers that bundle together and exit to the brain through the optic disc located at the back of the eye. The optic disc has a center portion called the ďcupĒ which is normally quite small in comparison to the entire optic disc.

In people with glaucoma damage, because of increased pressure in the eye and/or loss of blood flow to the optic nerve, these nerve fibers begin to die. This causes the cup to become larger in comparison to the optic disc, since the support structure is not there. Optic nerve cupping progresses as the cup becomes larger in comparison to the optic disc.

Both people with and without optic nerve damage have optic nerve cupping, although those with glaucoma tend to have a greater cup-to-disc ratio. A cup to disc ratio greater than six-tenths is generally considered to be suspicious for glaucoma. Through periodic photographs of the optic nerve, the ratio of the cup to the disc can be monitored. This helps the doctor determine whether or not damage is still occurring to the nerve fibers with current treatment and/or if treatment should be modified.

Iíve been told that Iíve lost 80 percent of my optic nerve. However, my doctor says I have good to fair vision. I thought that optic nerve damage is what causes you to lose your sight-how can I have so much optic nerve damage and still have good to fair vision?

Certainly an optic nerve that has been visually observed by the eye doctor to be 80 percent damaged is more fragile than an optic nerve with less damage. However, an estimate of glaucoma damage looks at more than optic nerve damage. Usually, an eye doctor will estimate the extent of damage to vision by evaluating the amount of damage to both the visual field and the optic nerve. This is determined by eye examinations.

Q & A by Scott Burk, MD, PhD, Associate Ophthalmologist, and John S. Cohen, MD, Chief of Glaucoma Services, Cincinnati Eye Institute, Cincinnati, OH, and Harry Quigley, MD, Director of the Glaucoma Service, Wilmer Ophthalmology Institute, Johns Hopkins Hospital, Baltimore, MD.

Here is a wonderful site that may also be of help. Glaucoma
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