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> Multiple Sclerosis, How do you or your family deal with it?
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Patch 
Posted: 30-Jun-2008, 05:19 AM
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QUOTE (gwenlee @ 29-Jun-2008, 06:03 PM)
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

The people I know who are getting it now are mostly in their late teens or early 20's. In the late 70's, the newly diagnosed at MS meetings were mostly late 20's. We are exposed to many things today that we have no way knowing about. Preservatives have been added to our foods fr years. In the 70's there was no law causing packagers to list them. There are at least a couple of dozen agricultural chemicals 10 or so of which are widely used. Municipal water supplies are only required to test for one! (Atrazine) I am probably old fashioned, but I believe that if it does not occur naturally, We should not have it in the food or water supply. Further, I do not believe we should be playing with genetic modification of plants or the animals involved in food production. It is impossible to avoid all of he risks unless we raise all our food and drink only highly treated water.

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DesertRose 
Posted: 05-Jul-2008, 03:57 PM
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One of my beloved nieces has MS. Autoimmune diseases run rampant in our family, rheumatoid arthritis, lupus, fibromyalgia (I have the latter). My niece is only 34 years old and was mis-diagnosed for so many years. Now they believe she has had this since her teens. She has gone on so many treatments, but a lot of it I really don't understand and am not up to par on. Even though she is fighting to be on disability, as she can no longer work, she keeps a very positive attitude and remains very strong in her faith in God.

I also have a couple friends who have this horrid disease. I sure wish they would find a cure.


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Patch 
Posted: 07-Jul-2008, 11:14 PM
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QUOTE (DesertRose @ 05-Jul-2008, 09:57 AM)
One of my beloved nieces has MS. Autoimmune diseases run rampant in our family, rheumatoid arthritis, lupus, fibromyalgia (I have the latter). My niece is only 34 years old and was mis-diagnosed for so many years. Now they believe she has had this since her teens. She has gone on so many treatments, but a lot of it I really don't understand and am not up to par on. Even though she is fighting to be on disability, as she can no longer work, she keeps a very positive attitude and remains very strong in her faith in God.

I also have a couple friends who have this horrid disease. I sure wish they would find a cure.

They may be close as they are asking now about pollution in the food and water supply. I live in an area that is a hot bed of autoimmune disease and rare cancers. We have a lot of agricultural run off in our water and have had for many years. A word of advice, get a SS disability attorney. In the 70's they took a percentage of the back benefits. That is better than nothing. If you go past 5 years with no employment you will NEED an attorney to successfully pursue the benefit. SS requires that you work 5 of the last 10 years to qualify but there are exceptions and for that you need the attorney for sure. It seems that the closer to regular retirement age one is, the easier it is to get disability. At age 30, SS is going to fight every step of the way. This is from experience!! Our experience was that information was always a day or so late or something was missing and we had to start over. This went on for two and a half years and then it became a matter of principal with my wife. She was just a little over 30 at the time. I expected we would have to pay the attorney as we proceeded but he took it on contingency. (If he didn't win we didn't pay) Then it was 33% but today I would expect it to be 40% as all other civil actions have gone up to that level. All of the tests required were done over or resubmitted and the claim was again turned down on a minor technicality. The attorney filed an appeal and within about 90 days from start to finish the claim was approved. We attended the appeal hearing but it was decided before we got there. We never saw the hearing officer! I think if I remember correctly, I figured the attorney made over $1000.00 an hour. I have some friends where the wife is manic depressive and was unable to work. At just about the 5 year mark she filed the final claim through an attorney and had the same result. Her claim was approved! She was about 45 years old at the time. Hope this information helps.

Good luck!!

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DesertRose 
Posted: 09-Jul-2008, 10:09 PM
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Hi Patch!

I figured my niece is having problems getting SSI due to her age. My niece, at 34, has been sick most her teen and young adult life and doesn't have a long work history. That may be what is causing her to not get the SSI, like you say. thanks! smile.gif
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Patch 
Posted: 07-Sep-2008, 02:39 PM
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QUOTE (DesertRose @ 09-Jul-2008, 11:09 PM)
Hi Patch!

I figured my niece is having problems getting SSI due to her age. My niece, at 34, has been sick most her teen and young adult life and doesn't have a long work history. That may be what is causing her to not get the SSI, like you say. thanks! smile.gif

Sorry I didn't pick up on your post sooner. Usually a SS law firm will take the matter on contingency (40% now) and that is tax deductable. I THINK they go back either 5 or 7 years. 60% is better than nothing and then she should get Medicare too. I wish her well!!

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DesertRose 
Posted: 16-Sep-2008, 02:06 AM
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hey Patch! Thanks so much! I will share with my niece!
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Patch 
Posted: 23-Jan-2009, 10:47 PM
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Though not a cure, this medication appears to show promise. I found this in a Netscape News release tonight. It might be worth trying to get into a trial.

"In a press statement, Merck said that patients taking cladribine tablets had a nearly 60 percent lower relapse rate than those on placebo pills."

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GalDriver 
Posted: 22-Nov-2011, 10:10 AM
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I have MS. It's as diverse as the people who get it. I was only diagnosed in April this year at the age of 52 (I'm 53 now) but think I've had it since my teens as it suddenly explained so many previously unexplained illnesses. An MRI I had a few years ago even showed 'bright spots' (scars) on my brain but as I had it for inner ear infection the consultant said he didn't know what it meant?!

This was found in me because of one spinal consultant - I have 4 degenerative discs in my lower spine - said it didn't seem right that my walking was so poor and recommended I see a neorologist. The rest, as they say, is history.

What I would recommend to anyone who has questions about MS is that you go to http://www.mssociety.org.uk/ and http://www.mstrust.org.uk/
Both have some excellent info.

Good luck to you all, people with MS AND the people around them.
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Shadows 
Posted: 22-Nov-2011, 12:49 PM
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I do not have MS but a similar disease with the same debilitating symtoms. It is called CIDP. I have recently undergone plasmaphoresis without a positive outcome. I am currently on 4 different meds that help some ( good days and bad days, the weather plays a role in that). I had a 6 day course of intravenious steriods in the hospital when I was first diagnosed, it slowed the disease down some. I walk assisted now and have the shakes in my right arm and hand. I have been told by my neurologist that if I catch the flu or anyother common disease it would either paralixe or kill me. My life expectency is 5 to 10 years, I am 59 yo. I was fortunate to be able to collect SSDI 2 months ago, but have to wait 2 years for yhe health portion due to it being pre-existing condition
So I do know how those with MS feel and my prayers are with them.


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