"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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