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Re: end stages

Posted: Sun Jun 08, 2014 7:59 pm
by Jeanne47
I share your heart break. My sister has had MS for about 35 years. She is bed ridden, lives in fear of dying and is consumed with delusions. She has medical needs that are critical but refuses to go to a doctor. Any suggestion to find a PA who will make house calls she refuses. Because of her delusions, she calls 911 daily and nightly. The police have requested that my sisters phone be taken away at night. She has a buzzer she rings when she needs help.she calls me several times a day upset because I am in her house stealing from her. She hears things and sees things which are not there. She has been deemed by the courts to be competent to make her own decisions and refuses my help. My heart breaks for her as she lives in fear of death and fear that strangers are in her house.
Has anyone else heard of MS patients having hallucinations/delusions here at the end?
Thank you. I'm becoming worn down by the pain in my heart for her and the helplessness for helping to ease her suffering.
Jeanne

Re:

Posted: Sun Jun 08, 2014 9:59 pm
by CaliReader
Jeanne47,

I have ms, I am no doctor. But I've studied this disease. MS usually doesn't cause dementia, but it can. MS usually doesn't cause hallucinations, but it can. It would be more typical for those of us who see things to know they aren't actually there. I'm sorry that's not true for your sister.

Re: end stages

Posted: Mon Jun 09, 2014 7:05 am
by lyndacarol
Jeanne47 wrote:I share your heart break. My sister has had MS for about 35 years. She is bed ridden, lives in fear of dying and is consumed with delusions. She has medical needs that are critical but refuses to go to a doctor. Any suggestion to find a PA who will make house calls she refuses. Because of her delusions, she calls 911 daily and nightly. The police have requested that my sisters phone be taken away at night. She has a buzzer she rings when she needs help.she calls me several times a day upset because I am in her house stealing from her. She hears things and sees things which are not there. She has been deemed by the courts to be competent to make her own decisions and refuses my help. My heart breaks for her as she lives in fear of death and fear that strangers are in her house.
Has anyone else heard of MS patients having hallucinations/delusions here at the end?
Thank you. I'm becoming worn down by the pain in my heart for her and the helplessness for helping to ease her suffering.
Jeanne
Welcome to ThisIsMS, Jeanne47. Our hearts go out to you. I wonder if there is any possibility that your sister was misdiagnosed 35 years ago; medical science has progressed a great deal in that time. Is there any way for her to have blood tests? Could a medical professional do a blood draw at the house? I have no medical background, but with your sister's delusions, hallucinations, and fears, I think it is entirely possible that she has a severe B12 deficiency. (Vitamin B12 is also known as cobalamin.)

I highly recommend that you watch this 50-minute documentary featuring Sally M. Pacholok, RN, BSN & her husband Jeffrey J. Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses) – read the book, too, if possible: maybe your library has it; Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab):

"Everything You Want Your Doctor to Know about Vitamin B12"


Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide
On page 303 of Could It Be B12?:
Appendix M: Cobalamin Deficiency Criteria List (CDCL)

II. Psychiatric Manifestations
Depression, suicidal ideations, postpartum depression, RX of antidepressants or other psychiatric meds
Irritability, anxiety
Paranoia
Mania
Hallucinations
Psychosis
Violent behavior
Personality changes
You and your sister are in our thoughts and prayers. If there is no way to test and establish a B12 deficiency beforehand, a doctor could prescribe methylcobalamin and the diabetic-type syringes/needles (which diabetics use to self-administer insulin) and you could give her daily injections subcutaneously as a diagnostic treatment – in other words, if she improves in any way with a trial of B12, one can assume she has a deficiency. B12 (cobalamin) is not harmful – any excess that her body does not need will be flushed out in urine. B12 is not toxic, has no negative side effects, and is inexpensive (usually less than $40 per year).

Re:

Posted: Mon Jun 09, 2014 4:43 pm
by SLOV8213
I could not get your mothers plight out of my head all afternoon. I often think of my own kids having to post the same tragic story. The following explains some of your poor mothers symptoms, which can be controlled by medication.
http://en.wikipedia.org/wiki/Pathologic ... and_crying
The second post is a friend of mine Deb who was treated along with me, never say never!


Re:

Posted: Mon Sep 22, 2014 12:54 am
by Sisterluke
my mom died... back in 2013. I have battled mental illness and addiction to alcohol ever since. I hope I become a better person after her. Just goes to show the family after dealing with ms. It is horrible.

Re:

Posted: Mon Sep 22, 2014 1:05 am
by Sisterluke
she is dead...... messed up my father and messed up me.

Re: Re:

Posted: Mon Sep 22, 2014 8:29 am
by lyndacarol
Sisterluke wrote:my mom died... back in 2013. I have battled mental illness and addiction to alcohol ever since. I hope I become a better person after her. Just goes to show the family after dealing with ms. It is horrible.
Sisterluke, I am so sorry to hear the news of your mother's death. Thank you for returning to share the news with us. My heart goes out to you; you have had to bear a heavy burden in your young life.

My mother also died in 2013 – it is never easy to lose one's mother. I am convinced that mothers always want the best for their children, that they love them in the way they can – in the circumstances they are given in life. Your mother would have done anything she could to give you a good life – the best life possible.

Given her health problems, she would want you to take charge of your health, find a GP you trust and respect, and try to get control of the problems you identify. You CAN become a healthier person – lifestyle, diet, and family/friends around you will help. You will feel lost for a while, but you will find the direction and purpose for your life if you look. Maybe a good friend, a favorite teacher, a physician, a minister, a psychologist, a therapist of some sort could be useful in finding your way – you are not alone… even we want to help you any way we can. With your perspective, you can offer us help, too. Please continue to share with us here; this site is not only for those people WITH MS, but is also for those who have cared about people with MS.

Your brush with MS, through your mother's experience, has made you a unique personality. You can use this to become a stronger, more caring, more understanding, and wiser person than you would have been otherwise. I believe there is a purpose for every life – if you look, you will find yours. You are a stronger person than you think you are right now.

You are in my prayers.

Re:

Posted: Mon Sep 22, 2014 2:23 pm
by 1eye
I think it is incumbent on those who categorize the stages as not worth treating with conventional DMDs to prove that they will not work. It is the same disease with an unknown cause, and in my view there is no scientific or medical justification for denial of treatment at any stage.

I agree that none of us deserves this, and no-one deserves to be abandoned and not treated on account of age. The woman that was spoken of is not the only one who had improvements in a late stage from a CCSVI procedure. Annette Funicello did as well. I hope there are many who benefit, no matter how close to the end of their lives they were.

If further skin ulcers appear, I have had great success with an electronic muscle-stimulating machine which helps the calf and foot muscles to return blood up the leg, even when you can't walk. My understanding is this helps many diabetics too.

The ravages of MS brain damage may be responsible for psychiatric symptoms. Anxiety-reducing medications can help. In addition one may have migraine aura interfering with normal vision, even in the absence of a headache. As someone else said, DM syrup (dextromethorphan -- over the counter, from any drugstore) might help unwanted laughing and crying.

Re: Re:

Posted: Sat Oct 11, 2014 11:06 pm
by nullrejector
Sisterluke wrote:she is dead...... messed up my father and messed up me.
I know that nothing I say will help. But, I wish you peace in dealing with your grief. My mom died last year also--although not from MS--she died from lung disease. Her death affects my life in profound ways, and I'm still struggling with dealing with it. Now I just try to live one day at time. One day at at time.

Re: End Stage

Posted: Sun Dec 28, 2014 7:23 am
by nlamb2003
Sister Luke, My mother's story is so similar to your mom's. My mother was diagnosed in 88 and has been in a nursing home for the past 7 years. I fear for what is to come for her. She is bed ridden and only has limited use of one arm. I came to this site actually looking for any advice on dental procedures for those with MS and found myself wandering from story to story. She is scheduled for several extractions and I just don't have a great feeling about it.
I appreciate you for sharing your experience. Reading your story opened a new door for support. Thanks so much.

Re: nLamb2003

Posted: Sun Dec 28, 2014 10:27 am
by Moom9335
Be very proactive in asking why extractions are needed.
Sometimes, extreme measures are taken when minimal care can suffice.
Often, the shock of such treatments is very detrimental to the person,
and, they suffer needlessly.
Do not be shy about asking questions as well as refusing treatment
you think is NOT needed.

Re:

Posted: Fri Feb 06, 2015 8:00 pm
by pb87
This is pretty much the situation with my father. Although I read about alot of people stating the diagnosis started 20-30 years ago. My father has only had MS for 10 years, and they don't believe he'll make it to 11.

He was diagnosed in 2005, and suffered from seizures pretty commonly. About 3 years he was put into a nursing home as my mother had to get a job and take care of my younger siblings and could not care for my father anymore. Since he has been in the nursing home he has been in a steady decline. Last month he had to have a feeding tube put in, and recently has been suffering from several bouts of pneumonia. Tonight my mother called me ( I live a state away) and informed me that the nursing home is calling hospice in for my father as they believe he is nearing the end. He can no longer communicate, and can only use his left hand. It just seems the MS has advances so quickly that nobody expected hospice to be called in so soon.

I'm definitely baffled and it has completely turned everyones world upside down

Re: Re:

Posted: Sat Feb 07, 2015 7:42 am
by lyndacarol
pb87 wrote:This is pretty much the situation with my father. Although I read about alot of people stating the diagnosis started 20-30 years ago. My father has only had MS for 10 years, and they don't believe he'll make it to 11.

He was diagnosed in 2005, and suffered from seizures pretty commonly. About 3 years he was put into a nursing home as my mother had to get a job and take care of my younger siblings and could not care for my father anymore. Since he has been in the nursing home he has been in a steady decline. Last month he had to have a feeding tube put in, and recently has been suffering from several bouts of pneumonia. Tonight my mother called me ( I live a state away) and informed me that the nursing home is calling hospice in for my father as they believe he is nearing the end. He can no longer communicate, and can only use his left hand. It just seems the MS has advances so quickly that nobody expected hospice to be called in so soon.

I'm definitely baffled and it has completely turned everyones world upside down
Our hearts go out to you, pb87. All of us know what a terrible diagnosis MS is; you have seen the worst of it. We can't solve the root of the problem, but we are here to listen if you need an understanding friend.

I pray that you will be given strength at this time

Re: Re:

Posted: Sat Feb 07, 2015 10:19 pm
by 1eye
pb87 wrote:This is pretty much the situation with my father. Although I read about alot of people stating the diagnosis started 20-30 years ago. My father has only had MS for 10 years, and they don't believe he'll make it to 11.

He was diagnosed in 2005, and suffered from seizures pretty commonly. About 3 years he was put into a nursing home as my mother had to get a job and take care of my younger siblings and could not care for my father anymore. Since he has been in the nursing home he has been in a steady decline. Last month he had to have a feeding tube put in, and recently has been suffering from several bouts of pneumonia. Tonight my mother called me ( I live a state away) and informed me that the nursing home is calling hospice in for my father as they believe he is nearing the end. He can no longer communicate, and can only use his left hand. It just seems the MS has advances so quickly that nobody expected hospice to be called in so soon.

I'm definitely baffled and it has completely turned everyones world upside down
Very sorry to hear of him. Some cases of PPMS (like my friend who died at 30) go awfully fast. Nursing homes are often too hot, and if you have MS and have to stay lying down in a hot bed, well, for one thing your brain won't drain as well. For another, the heat will disable him further. If he has foot ulcers you must tell him it will work, and start every day half-hour treatments with the circulation boosting electronic machine. They really do work. My 83 year old father-in-law swears by his, and I swear by (not at) mine :-) This is not medical advice, just something I believe to be true.

Re: Re:

Posted: Thu Mar 19, 2015 5:19 am
by pb87
Our hearts go out to you, pb87. All of us know what a terrible diagnosis MS is; you have seen the worst of it. We can't solve the root of the problem, but we are here to listen if you need an understanding friend.

I pray that you will be given strength at this time

Thank you for all the support and kind words. Sadly this tuesday (3-17) he passed away. No matter how many times the drs or anyone told us, it didn't seem real. I remember being a child thinking that he was the biggest man I had ever seen. He owned a tree cutting company passed down from his father and sometimes my brothers and I would ask to go on the jobs just to watch him climb into the tree, chainsaw in hand and trim away dangerous branches. He was diagnosed when I was 17 after a car accident with a drunk driver. It boggles my mind how they just diagnosed it then, he went to regular doctor visits. Why did this take so long to notice? And since 2005 it's been a downward spiral. His seizures and even comas at time did a number on him as well as on the family. And the weightloss was just insane to me. We watched this strong 260lb 6'3 man who used to pull trees up, transform into a thin and fragile elderly looking man. And during the whole situation he never lost his pride. He wouldn't tell people about his MS, he was embarrassed and he didn't want people taking pity on him. But even strangers knew that something was right. My mother and I would have to inform people (without his knowledge) that he had MS because the vast majority of people thought that he was on some kind of drug. He didn't want help standing or walking and fought us tooth and nail when we refused to let him operate a vehicle. I feel horrible for my mother most of all. Since his accident he had tried to work, he even lied on a job application about certain certifications (forklift operator) and didn't inform the employer of his condition. It could have gone badly but within a day they had caught on and fired him. With him not being able to work my mother had to start working. We live in south texas, it's all refinery and oilfield and my mother has spent most of her life as a home maker. But she quickly opted to work in the oilfield, traveling states away, being away from my youngest brothers (12 &8) just to support the family. When she called me about my father passing she informed me that she couldn't afford to take more than 1 day off of work because the funeral bills were so expensive and nobody expected him to pass so soon.

I really appreciate all the kind words and it's nice to know that other people know how it feels. It just doesn't seem real.


I don't know if it's acceptable and if it isnt, I apologize. But my family has set up a gofundme account any contributions are appreciated.