Suggestions?

by Shalimar
(Houston, Texas)

QUESTION:


Memory loss and scrambled thoughts have progressed. Any suggestions on how to counteract these symptoms? I was recently diagnosed in 2012 and I take interferon injections to slow down the progression but I feel like I'm getting worse. Fatigue is a constant problem. I have RRMS but I think it's progressing to PPMS. Help.


REPLY:

Memory Problems


Memory loss or cognitive issues/problems and scrambled thoughts or brain fog are common symptoms for many MSers. They are symptoms you have to learn to manage more than having a medicine that will reduce the severity of these annoying symptoms.

For memory loss you will need to develop strategies like making lists, voice recordings, keeping a notebook, or something like that to help you remember things. Unfortunately this won't work in every situation.

I notice it's very difficult for Cir to remember names of people he has just met or new numbers, like phone numbers or addresses. I suggested we get a white board or bulletin board in our room so that when he is making calls and I'm not there, he will have a reference to jog his memory.

He'll be able to look at the board to find the name of his new aid or remember our new phone number when he needs it. It's funny because he remembers numbers from years ago - long term memory, but short term memory is what he has problems with. It may take months before he can recall something easily.

It's more frustrating for him than for me. I don't mind listening in on his conversations to help remind him of little facts he may have forgotten. I don't make him feel as though I'm tired of answering his question for the hundredth time - "What's my aid's name?"

If you don't have someone who is there most of the time, however, this can pose a problem. And even if you do, you may feel that you are a burden if they make you feel like you are bothering them. In this case you may want to use one of the above suggestions to help you remember numbers, dates, names; etc.

Strategies

Try to keep a small notebook and pen or pencil near your bed or anywhere you spend the most time. If writing is difficult, and you have a phone or tablet, look for an App that lets you either leave notes for yourself or make voice recordings. A calendar app or one that hangs near your bed or chair will help you remember dates as well.

Progression

As far as feeling worse, you may in fact be progressing. Usually when you go from RRMS to a progressive form of MS it's called Secondary Progressive MS. This is what happened to Cir. He started being diagnosed with Relapsing-Remitting MS and is now categorized as having SPMS or Secondary Progressive.

After his diagnosis in '93, he didn't experience much progression until he'd had MS for about seven years. That is when he also had to stop working. During this time he also went through several different MS medications to see if any of the others would help.

The symptoms from the interferons didn't go over too well, so he switched to glatiremer acetate or Copaxone. He has taken a break from this as well. His progression is slow, but he thought the interferons actually made him worse than better.

This is not to say that they won't work for you.
We know many people who they do work for - it all depends on you - your body and how you react to the medication. One of the main things we tell anyone with multiple sclerosis is to listen to your body. Learn to make adjustments or changes altogether when you feel something is not working.

Realize it is your body and you are the one living with the disease - not the doctors, not your family or friends, but you. If you're not comfortable with a course of treatment, work with your doctor to change it. If he or she is not willing to work with you, then it may be time to change doctors.

Fatigue

Symptoms like fatigue is one that has to be managed. I know it's frustrating as an adult to have to take a nap in the middle of the day, but sometimes that's what it takes to help you make it through the day. It's even more difficult if you are still working.

If you are, try laying your head down on your desk (after setting the alarm, of course), for a quick cat nap. You'd be amazed at how much just that small amount of rest can help. If fatigue becomes a bigger issue, especially if it interferes with the quality of your work, you may need to consider the decision to stop working or to lessen your hours - say from full-time to part-time to see if that may help.

All that being said, as MS progresses, you will need to make decisions about how you do things. It may be as simple as figuring out a different way of doing something - one that expends less energy. You may need to get someone else to help you with your bath and getting dressed so that you will have more energy for the outing with your family.

If you try to do everything all the time the same way you always have, you may not have the energy to participate in the things you want to and may begin electing to just stay home. This can lead to other problems down the road, namely depression.

I hope this helps you begin to see that although MS can be a very frustrating condition, it can also be managed to help you have a reasonable quality of life.

Take care,

Akrista

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