Adivce needed, is this normal for MS or should I take action

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Adivce needed, is this normal for MS or should I take action

Postby Zoldyck » Mon Jan 27, 2014 2:42 am

Hi all. I provide care for a friend with MS who was diagnosed around a year ago. I want to be clear that I am not a licensed caregiver, at least not yet. This person went from being able to attend work at a nice career normally to needing a cane/walker 95% of the time and have great difficulty doing day-to-day tasks in every area of life. It has been a big culture shock, but probably not news to many reading this.

The reason I am writing is because for the last two weeks my friend has done nothing but sleep all day. They may be out of bed 2 or 3 hours a day (though it's hard to tell exactly, since they may be up more when i'm asleep or at work). I am very worried and have been expressing my very serious concern to them as often as I can. Not to the point of being aggravating, but I want them to take their symptoms seriously and act on it. They have also lost considerable weight and I fear they are not eating enough. I offer to prepare food constantly, even if I prepare myself food with plenty for two and offer it, they decline. I don't know what to do!!

They recently changed their medication (an increase, I have a list but not sure I should post it) and they believe the change provoked this new exhaustion. Prior to the last two or so weeks, they probably slept less than I do! They'd be awake staying busy (even if sitting most of the time), getting exercise outside of the house, attending a support group... all the things I'd expect a person would want to do when newly diagnosed with MS. But these last few weeks I am just so worried... I am not sure how normal this is and if I should be more forceful in insisting they do something.

They are supposed to see someone today (Monday) about new bloodwork. I don't know if that is enough but I hope so.

Is this normal or should I be more worried? I need advice!
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Re: Adivce needed, is this normal for MS or should I take ac

Postby euphoniaa » Mon Jan 27, 2014 4:19 am

Zoldyck wrote: They recently changed their medication (an increase, I have a list but not sure I should post it) and they believe the change provoked this new exhaustion. Prior to the last two or so weeks, they probably slept less than I do!


Hello Zoldyck. I'm impressed with your care and concern for your friend! First, I would suggest that you run this new condition past a doctor, since we're only patients here. But, the rapid onset of such a debilitating (and unacceptable!) symptom immediately after a medication change suggests an obvious side effect rather than MS. If you check the medication inserts -- which are easily available online -- you may be able to tell which one.

If you list the new or suspected meds, we can help you find the info online. Virtually every medication I've looked up has posted their entire "Prescribing Information" insert on their website. I would also recommend caution about stopping such a powerful med abruptly, so check with the doctor.

Wishing both of you well!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Adivce needed, is this normal for MS or should I take ac

Postby Zoldyck » Tue Jan 28, 2014 3:49 am

Well, I believe they did not go to any appointment Monday, I do not know if they neglected to go or what... my friend is a very poor communicator and I have to fight to get any information at all from them.

I would like advice on what how to proceed... I am trying to get contact info from them for their specialists so I can talk to them directly... I don't know what else I can do. Are there any organizations or methods of help for people who seem intent on not seeking proper help when they need it?

I know that people with MS need frequent exercise and a good diet, important keys in fighting the progression of the disease. Neither is being done right now.

I am literally scared that they are giving up and just want to stay in bed until they die.
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Re: Adivce needed, is this normal for MS or should I take ac

Postby NHE » Tue Jan 28, 2014 6:45 am

Have you expressed your concerns to your friend and/or their caregiver in a 'sit down' one-to-one conversation? Can you find out what medications your friend is taking especially the name of anything new that was added recently? If so, then you can read through the prescribing information to check the known side effects. Some medications can cause depression. That might be particularly difficult to deal with.
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Re: Adivce needed, is this normal for MS or should I take ac

Postby NHE » Tue Jan 28, 2014 11:52 pm

Zoldyck wrote:They recently changed their medication (an increase, I have a list but not sure I should post it) and they believe the change provoked this new exhaustion.


If you have a list, you could always ask a friendly pharmacist to review it. The change in behavior could be a side effect of the new medication, or it could be due to an interaction with the other medications.
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