"End Stage MS"

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby whyRwehere » Sun Aug 22, 2010 12:06 am

These are very sad stories, so sorry to read them.
I would like to throw an old article out there, for people to consider, when the illness is diagnosed. Here is the Link.
It could be that having a bacteria thickening the blood makes the disease progress more rapidly...so we should all be checked for the possibility.
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Postby pangn08 » Thu Apr 21, 2011 7:59 pm

I just had to make an account to reply to this post.

My mother is also like yours. Her moods range from completely calm to screaming, cussing, crying, throwing things, ext. She is completely bedridden and has seen multiple doctors, psychologists, ext and has never been diagnosed with a mental disorder. The weird thing is that she can turn it off or on.

For example, she can scream or cuss at me, and if the phone rings she picks it up and says Hello! like any other person. You aren't alone. And now I know I'm not either.
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Postby leetz » Thu Apr 21, 2011 11:15 pm

:)

Many blessing's your way...CCSVI, Stem-cell???CCSVI...
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby mssucks2012 » Sun May 13, 2012 1:16 am

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Re:

Postby lyndacarol » Sun May 13, 2012 9:19 am

We welcome you to our community, mssucks2012. We understand your pain, we want to be supportive. You have found friends here who want to help in any way we can. No matter what the future holds, you are always welcome here – this is not only a good place for finding information, asking questions; we listen if you need just to vent. You and your family are in our thoughts and prayers.
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Postby Sisterluke » Sat Jan 26, 2013 4:13 am

I know it's been a few years since I posted on here. It's surprising considering I feel like it hasn't been longer than a year but it has. Basically my mother was suffering from a very progressive form of MS and entered "End Stage" MS where she was unable to move her limbs, swallow, speak, or gesture. She looked comatose even though her eyes would be open and slowly blink. She basically lost control of her body and occasionally would sneeze and yawn. We decided as a family after 3 and half years of my mom being in a nursing home that we should remove her feeding tube and allow her to naturally pass away. Her UTI's were not getting cleared because antibiotics stopped working and we as a family decided we didn't want her to die from pneumonia or UTI so we went through Hospice and had her come home and be comfortable with us the remainder of her life.

We took her home on Jan 10,2013, removed the feeding tube on her and she comfortably passed away on Jan 19,2013. My father and I still wonder if we made the right decision. After all, Annette Funicello's husband still takes care of her even though she's in the same situation as my mother was. But the thing is, I know my mother wouldn't have wanted to live her life in a nursing home completely paralyzed living out the rest of her life that way.

One thing that has been hard on us is that we haven't been able to meet other families that have had to deal with End Stage MS. I don't know if it's because it only affects 10% of MS patients or if it's so painful that nobody will reveal themselves to the public. When I come on message boards and attend MS walks, nobody cares to talk about it. I know it's depressing but it does families like ours and my mother no good. AS much as it's painful and borderline offensive to Annette, I'm glad her husband has shown her as she is now on a segment shot back in OCT. Believe it or not she is the only other person I've seen that looks just like my mother did. maybe there are more MS patients out there going through that last stage that I haven't encountered yet and obviously they wouldn't be able to post on here but I just wanted to note a criticism on MS support organizations unless I'm wrong. There's never any discussion on the severe MS patients and there needs to be just as much as relapsing remitting patients so we can get a better understanding of this disease. I've researched progressive MS since 1992, and in 2013 it's still hard to come across the same case my mom has.

My mom has passed away a week ago from this disease and she may be gone resting in peace finally and no longer suffering but I'm still fighting for her and my father, and her sisters as well.
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Re:

Postby lyndacarol » Sat Jan 26, 2013 9:27 am

Thank you for returning here and updating us on your mother. You and your family faced a most difficult situation! I can sense your love for her; you gathered all the information you could and made the best decision you could – I think this is what we all try to do. I respect your courage and strength to continue working on behalf of your mother and family. May God bless you all.
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Postby Sisterluke » Sat Jan 26, 2013 2:13 pm

Thank you. I apologize if the tone of my original post was angry. My mood since her passing has been very up and down. I'm 28 years old, her only child, without a husband and kids so I feel bad that she couldn't have had another child that wanted to get married early in life and raise a family. She was never a grandmother. I was never the girly girl she wanted, I consider myself a straight female but I'm not big on marriage or children so that was never my top priority. My top priority was taking care of my mom, working, and traveling with friends.

My father is completely heartbroken and doesn't know how to live without her.

But like I said, she never wanted to live the rest of her life like that. There's a certain relief that she's at peace now and no longer suffering from that disease. Everytime I saw her in the nursing home I would keep my distance because it was incredibly stressful for me to see her that way.

I guess I struggle with she's at peace now so we did the right thing versus the stress of orchestrating her death through hospice. I was in her room when she stopped breathing and the first thing I thought of is wanting to rewind that time and see her breathe again because I realized that we did this and I have no idea how long she would have lived in that state if we hadn't done what we did.

She never told us what she wanted to be honest, but all I know is she hated hospitals and never wanted to be bedridden and paralyzed like that. She wanted to live a good quality of life and eat real food and not be fed through a feeding tube.

If anyone on here at some point in their life fall into that situation, I want to suggest even though I know it's difficult to your family what your wishes are ahead of time in case something happens. My mom always was determined to get better and she always thought she would get better. Unfortunately she never wanted to think of the worse case scenario either and that left us in this situation.

Thank you for reading and I hope nobody takes offense, I'm still a little in shock over everything.
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Re:

Postby lyndacarol » Sat Jan 26, 2013 4:28 pm

It is completely normal to rerun the events of the last month, even every event in the last three years. But you knew her well and knew the kind of life she wanted – even if she never came right out with the specifics. I think she is indeed at peace now; she would want you to be at peace with the decisions, too. Too often we think we are in control of life's events, in truth most things are out of our hands. Your advice to us is very valuable; we all (including me) should prepare for eventualities.

Your loss is all so new; you are "a little in shock." It is not something you "get over" – it is a part of your story from now on. You are strong and will be able to deal with it. You're always welcome here, Sisterluke – asking questions, seeking information, or just to vent. May God be with you.
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Re:

Postby nicolda » Sat Feb 23, 2013 1:08 am

Hi all and Sisterluke!

I've been combing the internet for any kind of educational help about those with MS, to find out something of what the end stages are like for the individual, and I came across this post.

My mother is also in the end stages. She's had it since I was little. At least for 25 years. I've been living in California for 4 years and due to expenses have not visited as much as I should until recently and only then was it because my Grandma had passed away. Anyways while I was home I noticed that she a developed a bed sore that went straight to the bone. Since then she's had surgeries to clean it out but to no avail. It is not healing and she is developing more. They will not heal. All this started in August of last year and her condition is even worse as she is wasting away due to malnutrition. She still eats but her body is not absorbing the nutrients. There are signs of mental instability such as the memory shadiness and screaming. But the doctors refuse to say anything about what the future looks like for her.
Sisterluke, your post is reflective of own mother's situation. I am fearful that steps will be made to put her into hospice care. My father has been taking care of her for a long time with the help of CNA's. There is a nurse that comes to the house to check her wounds but is hell bent on taking her out of the house. I know that she requires full 24 hr care but I know that will be the end all, be all.
I'm sorry I don't have any questions really but felt a need to post something because I do not share my mother's situation with hardly anyone mainly because I know they wouldn't understand. I'm glad, in a weird way, that there are children of parents with MS that have gone through the same thing. Sisterluke my heart and soul go out to your family. Such a hard thing to decide. If you believe in heaven or a better place I'm sure that's where she is. No one should have to go through this awful disease.

Thank you for allowing me to vent a little. I am preparing for the worst this coming year.
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Re: Very aggressive MS

Postby visionofvenus » Thu Nov 07, 2013 1:07 am

I am the mother and full time caregiver for my sweet daughter who was diagnosed in 2007 with MS. In 2008 she was rediagnosed with progressive MS. Her neurologist has told me he has only seen one other case this progressive. She is bedridden and has pretty much every symptom a person can have. she cannot use her hands because of tremors. she cannot walk or stand. She has no bladder or bowel control. She only uses Ensure for nourishment as choking has become such a problem. She has cognitive issues, short term memory problems, inappropriate behavior, cursing. She is 29 years old, was diagnosed at 23. I share the frustration I've read on so many web sites concerning the lack of information regarding end stage MS. Doctors are vague at best when I ask what to expect and I've searched the web for anything I can relate to and find nothing. My rant is this: I take care of her here at home and it does take up pretty much all of my time but I don't think it is crazy of me to want to do this. I believe most mothers would want their daughter with them as long as possible. I have 2 other daughters who are in their 30s, have families of their own and know that I love for them to visit as often as possible. My marriage is horrible but it was that way before my daughter became sick. I won't bore with details but it's important to know that we don't actually have a marriage and this was my husband's doing. He is very much to himself, always has been, and sits In his room all night on his computer and sleeps all day. Here's the point, one of my daughters and my husband suddenly have become resentful of my daughter and the fact that I devote my time to taking care of her, of being in her room taking care of her most of the time. They told me recently that I should put her in a nursing home which I will not do. Someday I may not have a choice but for now I want her here with me so I can have as much time with her as I can, along with the fact that for her, the thought of being in a nursing home is beyond devastating. She has said she would prefer to die than be put in one and I don't blame her. I have a huge family that all live within 5 miles of me and they all have an opinion about what I should be doing yet not one of them has ever offered to come over and help for an hour. Not one person in my family has read a book about MS which blows my mind. They all think they are experts about MS because they seem to know a neighbor who has an aunt with RRMS who is doing great so they believe if I would just force my daughter out of bed, which required a hoyer lift, and make her drink pureed veggies she would get better. This is tearing my family apart. I hear my husband being hateful to her and it makes me hate him. When my daughter was here telling my daughter with MS that she should go into a nursing home I was so hurt at how cold she was that I can't get past it. I feel like it is me and my daughter against the world. She knows the only person she really has is me. Imagine being in your 20s dealing with everything she does, knowing it will only get worse. the loneliness, knowing she'll never date or get married, never be a mother, all her friends disappeared as she became more disabled, being talked to hateful by family members who resent her for taking my time. I feel so much hurt and anger. I will lose my daughter after these years of watching her deteriorate which is enough to kill a mother and I know that when she is gone I will look at the people who were so unkind and hateful and I will feel such resentment. I know this isn't a question but I guess I needed somewhere to get this off my chest and see if there is anyone out there who has faced a similar situation.
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Re:

Postby LR1234 » Thu Nov 07, 2013 5:36 am

I'm so sorry to hear of your daughters situation and if course your situation having to devote your life to a sick daughter:(
On this website there is lots of good information about things that can be done to help your daughter. I'm not saying any of them will be a miracle cure but many of us have found some benefits in juicing, taking lots of omega 3 oils, sublingual B12 and high doses of vitamin D. (See sick and nearly dead joe cross).
There are also some new chemo drugs available that might help switch the disease off for a bit or at the very least slow it's progression.
I know everyone has an opinion on the way one handles their situation but it's very easy to make judgement when they are not living it every day. If my mum felt pressured to put me in a nursing home one day I would be devastated. I think it's awful for you being told that and doubly awful for your daughter to hear that:( us MSers do have a guilt about being a burden sometimes (I know I do) but if we could just get up and do things ourselves we would......(it's not your daughter's fault she never asked for this) so I'm glad you are standing by her but I also appreciate you need a life too so I wish there was someway for you to be able to share the caring.
If you have a chance as mentioned do look into sick and nearly dead, joe cross, terry wahls and George jelinek as they are all working hard to help people improve their health through diet.
I wish you and your daughter the best xxx
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Re: Very aggressive MS

Postby lyndacarol » Thu Nov 07, 2013 10:39 am

visionofvenus wrote:I am the mother and full time caregiver for my sweet daughter who was diagnosed in 2007 with MS. In 2008 she was rediagnosed with progressive MS. Her neurologist has told me he has only seen one other case this progressive. She is bedridden and has pretty much every symptom a person can have. she cannot use her hands because of tremors. she cannot walk or stand. She has no bladder or bowel control. She only uses Ensure for nourishment as choking has become such a problem. She has cognitive issues, short term memory problems, inappropriate behavior, cursing. She is 29 years old, was diagnosed at 23. I share the frustration I've read on so many web sites concerning the lack of information regarding end stage MS. Doctors are vague at best when I ask what to expect and I've searched the web for anything I can relate to and find nothing. My rant is this: I take care of her here at home and it does take up pretty much all of my time but I don't think it is crazy of me to want to do this. I believe most mothers would want their daughter with them as long as possible. I have 2 other daughters who are in their 30s, have families of their own and know that I love for them to visit as often as possible. My marriage is horrible but it was that way before my daughter became sick. I won't bore with details but it's important to know that we don't actually have a marriage and this was my husband's doing. He is very much to himself, always has been, and sits In his room all night on his computer and sleeps all day. Here's the point, one of my daughters and my husband suddenly have become resentful of my daughter and the fact that I devote my time to taking care of her, of being in her room taking care of her most of the time. They told me recently that I should put her in a nursing home which I will not do. Someday I may not have a choice but for now I want her here with me so I can have as much time with her as I can, along with the fact that for her, the thought of being in a nursing home is beyond devastating. She has said she would prefer to die than be put in one and I don't blame her. I have a huge family that all live within 5 miles of me and they all have an opinion about what I should be doing yet not one of them has ever offered to come over and help for an hour. Not one person in my family has read a book about MS which blows my mind. They all think they are experts about MS because they seem to know a neighbor who has an aunt with RRMS who is doing great so they believe if I would just force my daughter out of bed, which required a hoyer lift, and make her drink pureed veggies she would get better. This is tearing my family apart. I hear my husband being hateful to her and it makes me hate him. When my daughter was here telling my daughter with MS that she should go into a nursing home I was so hurt at how cold she was that I can't get past it. I feel like it is me and my daughter against the world. She knows the only person she really has is me. Imagine being in your 20s dealing with everything she does, knowing it will only get worse. the loneliness, knowing she'll never date or get married, never be a mother, all her friends disappeared as she became more disabled, being talked to hateful by family members who resent her for taking my time. I feel so much hurt and anger. I will lose my daughter after these years of watching her deteriorate which is enough to kill a mother and I know that when she is gone I will look at the people who were so unkind and hateful and I will feel such resentment. I know this isn't a question but I guess I needed somewhere to get this off my chest and see if there is anyone out there who has faced a similar situation.


Welcome to ThisIsMS, visionofvenus. Like LR1234, I am so very sorry to hear of your daughter's situation. We are here to help you in any way we can, even if that is only to listen. I understand your love and devotion to your child; the pressures and demands on you are overwhelming – I am sad that no one has stepped up to help you. Are there social/community services in your area, or a church relationship, or a counselor/therapist that might support you in some way that you need? Can you find even one compassionate physician or family member with whom you can be open and really talk to about your feelings? Your daughter has specific needs, but YOU have needs, too. I want to believe that someone wants to help you, but simply doesn't know how – can you offer them some direction?

You have found a group of friends here at ThisIsMS; we all have different experiences and opinions with this AWFUL disease. Here is one of the earlier discussions about the documentary film, Fat, Sick and Nearly Dead, that LR mentioned: diet-f9/topic19680.html?hilit=fat, sick and nearly dead

And another: diet-f9/topic20493.html?hilit=fat, sick and nearly dead

If the two men in the film could be healthy and even overcome their autoimmune disease with a "juice diet" of several months, perhaps even this is worth a try in these desperate times with your daughter and her MS (another autoimmune disease).

Even Dr. Terry Wahls has found improvement with diet in her MS: http://www.terrywahls.com

At this time, I have my own unique ideas about my MS: I think that diet is very important. I have incorporated juicing into my diet. I have eliminated wheat/gluten from my diet – does the Ensure your daughter uses contain a wheat or gluten component? Even among the experts, the cause of MS is unknown. We are all searching. We understand your frustrations. We are glad to have you share with us.
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Re:

Postby SLOV8213 » Thu Nov 07, 2013 2:19 pm

http://ms.about.com/od/signssymptoms/a/cmp_ieed.htm
This can be treated. The Deb story you may find inspirational?
http://www.ccsviclinic.ca/?p=1084
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Re: very progressive MS

Postby Moom9335 » Tue Nov 12, 2013 1:06 pm

VisionofVenus....NO ONE, and I mean NO ONE who is not experiencing what you and your daughter are can even begin to
understand or relate to your lives. My son also had an aggressive, progressive case of MS. He tried EVERYTHING to heal himself.
I will not go into any more detail,, but you can read his blog thegreekfromdetroit.com.
He made the choice to die and did so on March 3, 2013. He did not want the life MS had condemmened him to.

It is the greatest tragedy of my life. My heart goes out to you and your daughter.
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