This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

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.

Many blessing's your way...CCSVI, Stem-cell???CCSVI...

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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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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.

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.

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.

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.

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.

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.