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Celtic Radio Community > Health Matters > Multiple Sclerosis


Posted by: gwenlee 03-Mar-2008, 06:59 PM
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.

Posted by: valpal 59 04-Mar-2008, 10:57 AM
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.

Posted by: ctbard 04-Mar-2008, 11:43 AM
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.

Posted by: gwenlee 04-Mar-2008, 12:02 PM
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.

Posted by: ctbard 04-Mar-2008, 12:28 PM
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.

Posted by: gwenlee 04-Mar-2008, 12:40 PM
ctbard I think your sister-in-law might be taking Avonex is it a once a week injection?

Posted by: ctbard 04-Mar-2008, 02:59 PM
Yes, it's a once a week injection, I'll have to find out the name of it next when I speak to her.

Posted by: UlsterScotNutt 04-Mar-2008, 04:05 PM
gwenlee, You and yours are in my prayers. Fred

Posted by: gwenlee 04-Mar-2008, 04:51 PM
Thanks for the prayers, UlsterScotNutt

Posted by: valpal 59 05-Mar-2008, 10:18 AM
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.




Posted by: gwenlee 05-Mar-2008, 02:36 PM
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.

Posted by: Rindy 05-Mar-2008, 10:15 PM
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

Posted by: valpal 59 06-Mar-2008, 02:17 PM
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.

Posted by: gwenlee 10-Mar-2008, 11:39 PM
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.

Posted by: Rindy 23-Mar-2008, 07:51 PM
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 “cup” 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.

I’ve been told that I’ve 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. http://eugeneeyecare.com/conditions/Glaucoma.html

Posted by: gwenlee 24-Mar-2008, 06:52 AM
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.

Posted by: Patch 19-Apr-2008, 05:08 PM
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!

Slàinte,    

Patch

Posted by: gwenlee 30-Apr-2008, 12:44 PM
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.

Posted by: Rebecca Ann 30-Apr-2008, 02:10 PM
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.
RebeccaAnn
[email protected]

Posted by: gwenlee 03-May-2008, 06:54 AM
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.

Posted by: gwenlee 20-Jun-2008, 03:55 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.

Posted by: Rindy 23-Jun-2008, 04:01 PM
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.

Slainte

Posted by: Patch 23-Jun-2008, 06:23 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    

Posted by: ctbard 23-Jun-2008, 06:31 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.

Posted by: valpal 59 24-Jun-2008, 08:47 AM
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.

Posted by: gwenlee 24-Jun-2008, 01:52 PM
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.

Posted by: Patch 24-Jun-2008, 07:12 PM
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.

Slàinte,    

Patch    

Posted by: gwenlee 24-Jun-2008, 07:25 PM
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.

Posted by: Patch 24-Jun-2008, 08:07 PM
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.


Slàinte,    

Patch    


Posted by: gwenlee 29-Jun-2008, 11:03 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

Posted by: Patch 30-Jun-2008, 04:19 AM
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.

Slàinte,   

 Patch    

Posted by: DesertRose 05-Jul-2008, 02:57 PM
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.

Posted by: Patch 07-Jul-2008, 10:14 PM
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!!

Slàinte,    

Patch    

Posted by: DesertRose 09-Jul-2008, 09:09 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

Posted by: Patch 07-Sep-2008, 01:39 PM
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!!

Slàinte,    

Patch    

Posted by: DesertRose 16-Sep-2008, 01:06 AM
hey Patch! Thanks so much! I will share with my niece!

Posted by: Patch 23-Jan-2009, 09:47 PM
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."

Slàinte,    

Patch    

Posted by: GalDriver 22-Nov-2011, 09:10 AM
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.
Love Anna.xxx

Posted by: Shadows 22-Nov-2011, 11:49 AM
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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