"End Stage MS"

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Re: end stages

Postby Jeanne47 » Sun Jun 08, 2014 8:59 pm

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
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Re:

Postby CaliReader » Sun Jun 08, 2014 10:59 pm

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.
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Re: end stages

Postby lyndacarol » Mon Jun 09, 2014 8:05 am

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"

http://www.youtube.com/watch?v=BvEizypoyO0

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).
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Re:

Postby SLOV8213 » Mon Jun 09, 2014 5:43 pm

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!

http://youtu.be/BfSOmij8tfk
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Re:

Postby Sisterluke » Mon Sep 22, 2014 1:54 am

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.
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Re:

Postby Sisterluke » Mon Sep 22, 2014 2:05 am

she is dead...... messed up my father and messed up me.
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Re: Re:

Postby lyndacarol » Mon Sep 22, 2014 9:29 am

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.
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Re:

Postby 1eye » Mon Sep 22, 2014 3:23 pm

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.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Re:

Postby nullrejector » Sun Oct 12, 2014 12:06 am

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.
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