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Hoping those of you who have M.S. or any kind of experience with M.S. .... Or anyone who has had this same experience ...... can enlighten me on what the doctor is NOT SAYING? Don't know if doctor really presented it to her in such an insensitive manner, or not. Does this means she needs hospice?
She is late 60's, has had M.S. for probably 30 years. Keeps having exacerbations. It's hard for me to believe that is exactly what doctor said. Friend often is on infusions and goes into hospital periodically.
It seems a bit insensitive of doctor to not give her any advice on what to do NOW, TODAY. She often is in denial about her M.S., and her pride can keep her from sharing the whole story with us, so doc may have given her some advice she did not like so she often forgets to mention that advice to her friends.
She is very proud, and has little money since she is a retired government employee on disability. Some research I did says patients who can no longer take the M.S. meds will often resort to physical therapy, occupational therapy, and other more holistic treatments. I don't know what to think. Does this mean my friend is dying? Or that her life will become unbearable living without treatment. I know there is also something about the immune system where an M.S. patient often has a problem with the meds after a while.
Any insights would be sincerely appreciated. We are in a large group of friends and there are going to be a lot of questions. None of us are heavy-duty medical people. I would like a bit of education - from people who have more life experience than I do - before I start asking questions. And understand how to read between the lines when my friend starts to relate her story to us.
MS is a progressive disease. I would not necessarily assume the doctor has said something wrong or that they are giving up on treatment as it sounds like you have incomplete information at this time.
I would focus on asking your friend ways that you can support her. Would it be helpful for her if you brought by meals sometime? Came by for visits? Helped drive her to appointments if she's not able to drive any more?
Sorry about all the questions that you have but if you really think about it we are not really talking about her problems as much as your problems in dealing with it.
It is never really fruitful to be getting information second hand when trying to solve problems. If she has a problem with her medical care then she should seek another medical opinion. Get a second opinion or third opinion so that she can be comfortable with that opinion. There's nothing you can do to overrule her actions and opinions. Stop trying to rationalize her actions as questionable and only if we know what the doctor is really saying or not saying we can somehow make sense out of it. You never will because you aren't her and don't have custody over her care.
You need to deal with your emotions and politely ask her if there is anything you can do from the medical aspects which you gravitated to. That would alleviate some of your fears. There are also issues of life and death that you must resolve along with going through a grief process while she is alive. There's a lot on your plate but don't confuse her needs with your needs and recognize the difference. People tend to react and see situations as though they are the ones experiences the MS and then try to guess what I would want or do. People have other views but we tend to impose our views on others in order to lower the anxiety that we are experiencing. For all we know she may be lying or pretending that she is dying or lying as to what the doctor said. That's her setting her boundaries which you have to be willing to respect. I don't know what's going on.
Let her be the captain of the ship and let her talk to you as to what she needs and you can make suggestions.
Hoping those of you who have M.S. or any kind of experience with M.S. .... Or anyone who has had this same experience ...... can enlighten me on what the doctor is NOT SAYING? Don't know if doctor really presented it to her in such an insensitive manner, or not. Does this means she needs hospice?
She is late 60's, has had M.S. for probably 30 years. Keeps having exacerbations. It's hard for me to believe that is exactly what doctor said. Friend often is on infusions and goes into hospital periodically.
It seems a bit insensitive of doctor to not give her any advice on what to do NOW, TODAY. She often is in denial about her M.S., and her pride can keep her from sharing the whole story with us, so doc may have given her some advice she did not like so she often forgets to mention that advice to her friends.
She is very proud, and has little money since she is a retired government employee on disability. Some research I did says patients who can no longer take the M.S. meds will often resort to physical therapy, occupational therapy, and other more holistic treatments. I don't know what to think. Does this mean my friend is dying? Or that her life will become unbearable living without treatment. I know there is also something about the immune system where an M.S. patient often has a problem with the meds after a while.
Any insights would be sincerely appreciated. We are in a large group of friends and there are going to be a lot of questions. None of us are heavy-duty medical people. I would like a bit of education - from people who have more life experience than I do - before I start asking questions. And understand how to read between the lines when my friend starts to relate her story to us.
Research Terry Wahls, MD. She had MS for years.
Looks like they are still recruiting patients for clinical trials https://terrywahls.com
OP she needs to see a MS specialist. Not all doctors are experienced with MS. My wife has had MS for over 55 years. She goes to Mayo Clinic yearly to a MS specialist that charts her progress and makes suggestions for helping cope. Along with MS comes cognitive issues with aging too. My wife is still mobile but many of her MS friends are now ambulatory. MS effects every MS patient differently, there is no standard MS solution. There also is no cure at the present. Physical therapy helps with weakening muscles. Some medicine aid in coping some do not, it all depends on what is effecting the patient. A expert MS doctor would be the one to discuss her specific problems.
If the doctor is saying no more infusions, pills, etc. he must think they won't help her. Normally, someone would ask more questions after having the doctor say this to her/him and ask why. Maybe you are getting partial information and maybe she doesn't want to say more.
If the doctor is saying no more infusions, pills, etc. he must think they won't help her. Normally, someone would ask more questions after having the doctor say this to her/him and ask why. Maybe you are getting partial information and maybe she doesn't want to say more.
Either they won't help her or depending on what type of meds, he may not want to be the prescriber. Is she on narcotics? If so she may need to find a pain management place because a lot of doctors will not prescribe narcotics when they're not a pain management doctor.
I think you don't have the whole story as you said.
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