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