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> Multiple Sclerosis, How do you or your family deal with it?
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gwenlee 
Posted: 24-Mar-2008, 07:52 AM
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Thank you for the information Rindy. Sarah has had a visual field test, I don't know the results and she has increased pressure.

Has anyone out there used a cooling vest? I would like to know what you all think of them, how well it works, and what brand you use.
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Patch 
Posted: 19-Apr-2008, 06:08 PM
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My wife had MS and cold temps were her friend. Our AC was the first turned on each year and the last turned off. Her disease was fast, furious and devastating. About the only treatment then was Steroids. She was a twin and her sister developed Lupus at about the same time. She does fairly well with treatment. I know a lady who was in an advanced stage (excerbation?) of MS and barely walking. She went to Baylor University Medical Center in Texas 14 years ago, came back in remission. 6 months ago still one would not know she had ever been sick. I can not tell you what treatment she had but researching Baylor U's Med Center should get you info on their treatments. I live in a county of about 27,000 people and we have 34 cases that I know of and there are certainly more. I read somewhere that a community in Florida about the same size as mine had cases numbering under 25. They were considered a "hot spot" One would wonder how many communities exceed that number.

I suspect that chemicals or additives will be found to cause the auto immune reaction. I pray that research will find the cause and cure soon!

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gwenlee 
Posted: 30-Apr-2008, 01:44 PM
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Patch, about 10 years ago one of the local hospitals had around 5 or 6 cases of MS diagnosis within a year of each other. The CDC was called in but couldn't find a common denominator. I know that we were told that auto immune diseases seem to run in the family, not that it is inherited. But I have no auto immune diseases in my family and my husbands side his sister has had an auto immune disease, but not MS or Lupus. My daughter has to have AC. But she would love to be out doors more so we are looking into getting her a cooling jacket.

I agree that there is probably some chemical exposure that is at the bottom of MS and I too pray that there will some day be a cure.
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RebeccaAnn 
Posted: 30-Apr-2008, 03:10 PM
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I have know a few people with ms but don't know much about it. I do understand Sarah and many of her feelings though. I am multiply handicapped. I was born with cp, epilepsy and asthma. I also have lyphedema and rhumetoid arthritis. Both are autoimune desieses for which their is no cure. I get sick of all the meds and often wish I could tell all my drs to go away and leave me alone. I have to constantly have blood tests to check medicine levels and other things. They often do other tests and I feel like a guinea pig.
It is very hard at times and I get frustrated and sometimes just want to give up and quit. There are bad days and good days. Accept the bad and just live through them and enjoy the good times to their fullest.
Sarah, don't give up. There is beauty and good to be found in each new day and there is Hope.
Please tell Sarah write to me. Maybe we can be special friends and help each other. I have a loving and caring family but don't really have anyone to talk to that understands. I have a feeling Sarah is much the same as me. Always having medicine and having to depend on others to help with things most people take for granted, etc.
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gwenlee 
Posted: 03-May-2008, 07:54 AM
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Rebecca I will PM you with her email address. I know that Sarah sometimes feels like I am over protective. I'm always reminding her to rest, thats the big one. I know being 25 and not being able to do all the things that a 25 year old does is hard.

You know all the medications she takes can make her even sicker. They can affect her liver and kidneys so she has to have a lot of blood work. She has said so many times, "Mom I am just so tired of being tired."

This week we did get some good news about her eyes. The good news, she does not have gloucoma, and she sees well considering the damage to her optic nerve. The bad news is that there is a lot of damage to the optic nerve that will never reverse because as most of us know once nerve tissue is damaged it is permanent. And as always everything will depend on how her disease progresses.

I don't know if I mentioned that Sarah will be on chemo and steroids for a year, by that time her doctor is hoping that there will be a new medication release. I don't remember the name but there is a new one that is awaiting approval. As soon as I find out the name I will try to post something about it.
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gwenlee 
Posted: 20-Jun-2008, 04:55 PM
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I have no intension of using this palace as an update on my daughter, but hopefully some of you have been there done that or know who has. My daughter went through plasmapheresis last month after she was unable to move from her neck down with the exception of her left arm and hand. This was a ten day hospitalization with the procedure happening every other day. By the third treatment she was able to walk with assistance. She has had a follow up and her doctor has mixed feelings about her progress. She is now for the next 3 months going through steroids for 3 days and 1 day of chemo. In August she will have another MRI and future treatment will be determined.

Do any of you out there know anyone who has gone through plasmapheresis? What are your thoughts about it. I have read a lot about it, but reading and going though it are two different things.
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Rindy 
Posted: 23-Jun-2008, 05:01 PM
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gwenlee, I really hope you find some answers to your questions from someone about plasmapheresis. All of you have been through so much.

You would think out of 20,000 folks on here someone would know someone who had this done. I really hope you get some response.

Your all in my thoughts and prayers.

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Patch 
Posted: 23-Jun-2008, 07:23 PM
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If this is bothersome to anyone I apologize and please just ignore. I am wondering how many of those with MS and other autoimune diseases live or have lived in areas where herbicides or pesticides were used heavily in an agricultural setting. I have had extensive family experience with MS and some with Rheumatoid Arthritis and noticed that there could be a tie between autoimune diseases and chemicals. Also, my wife's twin sister has an autoimune disease.

Slàinte,    

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ctbard 
Posted: 23-Jun-2008, 07:31 PM
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QUOTE (gwenlee @ 20-Jun-2008, 04:55 PM)
I have no intension of using this palace as an update on my daughter, but hopefully some of you have been there done that or know who has. My daughter went through plasmapheresis last month after she was unable to move from her neck down with the exception of her left arm and hand. This was a ten day hospitalization with the procedure happening every other day. By the third treatment she was able to walk with assistance. She has had a follow up and her doctor has mixed feelings about her progress. She is now for the next 3 months going through steroids for 3 days and 1 day of chemo. In August she will have another MRI and future treatment will be determined.

Do any of you out there know anyone who has gone through plasmapheresis? What are your thoughts about it. I have read a lot about it, but reading and going though it are two different things.

Gwenlee, I"m sorry, I have never heard of this, I'll ask my sister in law, who has MS, and see if she has ever heard of it.Hope all goes well with your daughter.


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valpal59 
Posted: 24-Jun-2008, 09:47 AM
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QUOTE (ctbard @ 23-Jun-2008, 07:31 PM)
QUOTE (gwenlee @ 20-Jun-2008, 04:55 PM)
I have no intension of using this palace as an update on my daughter, but hopefully some of you have been there done that or know who has.  My daughter went through plasmapheresis last month after she was unable to move from her neck down with the exception of her left arm and hand.  This was a ten day hospitalization with the procedure happening every other day.  By the third treatment she was able to walk with assistance.  She has had a follow up and her doctor has mixed feelings about her progress.  She is now for the next 3 months going through steroids for 3 days and 1 day of chemo.  In August she will have another MRI and future treatment will be determined. 

Do any of you out there know anyone who has gone through plasmapheresis?  What are your thoughts about it.  I have read a lot about it, but reading and going though it are two different things.

Gwenlee, I"m sorry, I have never heard of this, I'll ask my sister in law, who has MS, and see if she has ever heard of it.Hope all goes well with your daughter.

I can't help either. When my sister-n-law was with us, steroids were the drug they used the most. Thoughts and prayers with you all.


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gwenlee 
Posted: 24-Jun-2008, 02:52 PM
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QUOTE (Patch @ 23-Jun-2008, 08:23 PM)
If this is bothersome to anyone I apologize and please just ignore. I am wondering how many of those with MS and other autoimune diseases live or have lived in areas where herbicides or pesticides were used heavily in an agricultural setting. I have had extensive family experience with MS and some with Rheumatoid Arthritis and noticed that there could be a tie between autoimune diseases and chemicals. Also, my wife's twin sister has an autoimune disease.

Slàinte,    

Patch    

At my daughters doctors office there is a sign that the CDC is interested in people who were diagnosed with MS between 1999 and 2001 and lived in the metro Atlanta area they are requesting a blood sample. So may be they are looking into pollution.
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Patch 
Posted: 24-Jun-2008, 08:12 PM
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QUOTE (gwenlee @ 24-Jun-2008, 08:52 AM)
QUOTE (Patch @ 23-Jun-2008, 08:23 PM)
If this is bothersome to anyone I apologize and please just ignore.  I am wondering how many of those with MS and other autoimune diseases live or have lived in areas where herbicides or pesticides were used heavily in an agricultural setting.  I have had extensive family experience with MS and some with Rheumatoid Arthritis and noticed that there could be a tie between autoimune diseases and chemicals.  Also, my wife's twin sister has an autoimune disease.

Slàinte,    

Patch    

At my daughters doctors office there is a sign that the CDC is interested in people who were diagnosed with MS between 1999 and 2001 and lived in the metro Atlanta area they are requesting a blood sample. So may be they are looking into pollution.

I am glad someone is still looking at this. My wife and her twin sister underwent testing through the national MS Society in 1979 because they were twins and one had MS, the other Lupus. Since we here are in a "hotbed" of auto immune disease and cancer, and we are in an agricultural area that got into chemical use early, I have always wondered about a relationship between disease and the chemicals. Our water is pumped from a watercourse that drains thousands of acres of farmland. I pushed the idea aggressively in the 80's but no one wanted to listen. I am still mad so maybe I should start again.

It seems like every month I hear of someone new with MS through either family or friends.

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gwenlee 
Posted: 24-Jun-2008, 08:25 PM
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A few weeks ago on Good Morning America they did a segment about toxins in children compared to their parents and it was amazing about the levels of chemicals found in children compared to their parent. This is going to be a big concern I think in the next few years. I have always wondered about chemical and their effect on our health. My daughter plans to give some of her blood for this research. Maybe they will find some answers.
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Patch 
Posted: 24-Jun-2008, 09:07 PM
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When you see the increases in Autism and Attention Deficit Disorder it certainly makes one wonder. My 11 year old grandson was given a diagnosis of MS three years ago and I insisted my Daughter and her husband take him to Childrens Hospital in Toledo. I had researched MS over the years and found nothing about it at that age. They determined in Toledo that he probably had Lyme disease. There has been no definite diagnosis but I see signs from time to time that really scare me. They do not live here but are in an agricultural community.

You know, even a pig, given a little room, will not foul the areas where it eats and sleeps! That sure does not say much for the human race.


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gwenlee 
Posted: 30-Jun-2008, 12:03 AM
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Patch the National MS Society has a section devoted to children with MS. The youngest person I know of with MS was 5 years old. I recently read an article about a nurse that was specializing in the area of pediatric MS. It is a new area. When my daughter was diagnosis with MS she was 17 and no one at the local childrens hospital knew of anyone her age with MS including the doctor who was attending her at that time.(this was in 2000). I think we are going to see that there is an environmental factor. I talked to a nurse yesterday and she said there is a high number of health care workers that have MS that work around anesthesia and researchers are looking for a link. I guess time will tell
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