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.
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:
Sore Mouth or Tongue
Stomach and G.I. Problems
Limb Movement Disorders
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
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).