Cognitive disorders - Advice needed

Can anyone offer advice for questions I can ask the professionals?

I was diagnosed Relapse/Remit in Nov 2011. For approx 6 months I’ve taken Gabapentin (now 1800mg per day) for neuro pain which has really helped with the serious pain.

The worst symptom (particularly worsening in the past few weeks whilst I’ve had flu), is forgetfulness, serious lack of concentration and focus, inability to do a list of things. I sometimes can’t even do just one thing without getting distracted and then the earlier task gets forgotten.

I fnd it so distressing as I live alone and have always kept a nice, tidy home. Nowadays, there is stuff everywhere and I just can’t seem to get motivated. It’s not depression as I had that years ago and this ‘malaise’ is totally different. Yet, just to contradict myself, on other days I’m full of motivation and have an enjoyable, productive day. It’s almost as if I’m being bone idle ‘when it suits’ but this really isn’t the case.

Watching tv is difficult because I can’t focus on the script whilst watching the characters! So I’m forever using the rewind button and a half hour programme takes me over an hour to digest.

Any conversations I have or people I see are totally forgotten within hours, unless it is a significant event.

My driving licence was revoked 13months ago based on cognitive function.

I recently changed hospitals and so I’ve seen my new MS Nurse twice. I need to speak to her with either my daughter or sister (they have noticed the decline in my ‘normality’). In any conversation I have, I appear to be articulate and on the ball, yet within minutes, I’ve lost the thread of the conversation.

As I am new to my MS nurse, I’m concerned she is unaware of my cognitive difficulties because she has already said that she has lots of MS patients who continue to drive and doesn’t understand why my licence has been revoked.

I look normal and have no visual disabilities whatsover, other than not walking in a straight line and bumping into door frames.

Can anyone offer me any advice? It’d be much appreciated

It sounds like your problem may have something to do with attention, which is something that a lot of people with MS struggle with :frowning:

I think the best thing you could do is ask for a referral to a neuropsychologist. They will do a thorough assessment and advise on ways to manage, and hopefully improve, things.

If your MS nurse isn’t helpful, then try your GP.

I notice you say that gabapentin has helped with the “serious” pain. If you have any remaining neuropathic pain, then you could increase your dose - the max dose of gabapentin is 3600mg per day. Pain is very tiring and could be adding to your cognitive problems.

A small possibility however: is there any correlation between you starting meds and you having attention problems? It could be a side effect.

Best to see a neuropsychologist to work it all out.

Good luck.

Karen x

Thanks SO much for your advice Karen. My attention span is seriously lacking.

I had no idea I could ask for a referral, I thought it was the decision of the Consultant or MS Nurse.

Gabapentin was increased from 900mg to 1800mg in December and unfortunately I fell ill with flu at end of December.

I’m currently taking a second lot of anti-biotics for a lingering chest infection

At present I have no idea if things seem to be worse due to the increase in Gabapentin OR because of the infection OR just part and parcel of MS.

It’s great to have found this Forum, as a newbie it’s great for support and advice.

Many of us suffer with the brain farts as my kids call them.

I was seen by the memory nurse who to be fair normally deals with people who have had strokes—however the end result is we all seem to have the same difficulties in everyday life.

This site does a booklet on dealing with cog fog,but the main thing is to work out strategies that work for you.

My guess is that you are accustommed to multi tasking…the hardest thing is to admit to yourself that you no longer can.

A calendar/daily wipe board can make a huge difference and I have to check it numerous times a day.

You have to be strict with yourself when tempted to just do something along the way eg if you are going to collect laundry,don’t take something upstairs with you while you go,because if you are like me you will find something that needs doing when you put that item upstairs and the next time you think of laundry is when hubby has no trousers for work!!

Do the laundry and tick it off the list.

Cooking can be a nightmare because of the waiting between things going on,the nurse tried to stop me cooking when alone but thats not practical so we compromised after a number of close shaves on me putting a timer on to remind me that I am cooking. To ensure we don’t end up with just the meat or just the veg,I also write down what has got to go on/in and when,and cross them off as done to remind me where I am up to. Check gas is off finishes every list…again after a number of accidents when the hob is left on.

Can’t believe at 45 and after being a care home manager it has come to this but it works for me most of the time and does avoid alot of frustration.

Take care

Pip