Memory and cognitive function

Hi Everyone, I am really struggling with my cognitive function, memory and simple functions. I was diagnosed with highly active rrms at 47. I am 48 now and am getting worse. I dont recognise my husband, children or places. I struggle with even the most basic tasks now. The neuro said there is no meds that will improve this. I can cope with being unable to walk and the other disabilities and the pain that i have but this is just horrific. Does anyone know of anything that will help?

1 Like

My RRMS has always been highly active too, and I’ve had it 20+ years. There aren’t any symptom treatments worth a damn. The only show in town is a high efficacy DMD that will keep your MS relatively quiet and minimise the future brain damage. For the past decade, Tysabri has done that job for me. If I had switched from Avonex sooner, I might be less stupid and more mobile than I am today, but that’s water under the bridge for me. For others like you, I urge you to protect your remaining brain function with all your might and to not take no for an answer when it comes to high efficacy DMDs.

1 Like

Since you were just diagnosed, I have to ask how long you’ve been having issues? Is it possible that you’re in the midst of a lengthy relapse now? I hate to give you hope, but if that’s what’s going on you might see an improvement in your memory in a few weeks or months.

Try to get on a DMT, if you’re not already. It won’t undo the damage that’s already been caused, but it can help a lot with the future.

Try some “sugar pills”. Find a harmless herb or other natural product that you firmly believe will help you and then start taking it. As long as it won’t hurt you, then it doesn’t matter whether the doctors believe it’ll help. What you think about it is the only thing that matters.

Play silly kids’ computer games or online solitaire/mahjongg. The ones I can do vary greatly based on my manual dexterity at the time, but when I was having trouble counting I found that playing solitaire helped a lot. Any kind of matching game is also good. I found one that requires you to find similar items instead of identical ones, and there are days that it’s incredibly hard for me.

As far as your family, maybe it would help if someone could put nametags on photos, either in their frames or maybe copies of them turned into a large poster. Put a current photo of the person beside one from when you first knew them. If it’s your short-term memory causing problems, maybe seeing photos of them from 5-10-30 years ago would jog something loose with your long-term memories.

I understand your frustration. I was an early reader, advanced classes, scholarship student, manager, historical researcher…and now there are days when I’m lucky to remember how to work the coffee maker or stove. Like you, I can cope with wonky legs and weak arms, but the loss of my mind brings enormous grief sometimes.

1 Like

I too suffer from cognition. MS Nurse sent me for psychiatric help. It turned out that the amount of cognition left was 75% and I made my signature over to my wife and sit here on my IPad all day. But I’m not in any pain. I haven’t had the use of my left arm nor leg for many years, so I don’t do anything. Life is such. I hope your problems ease over time.

2 Likes

Thanks Alison. I started on Tysabri in Aug 2021. My 6 month mri shows lots of new enhancing lesions, so i am not sure that it working for me. Easier to see the pope than my neurologist, when I do any new symptoms are just written off as functional. It is so frustrating.

2 Likes

Hi Noras Mom. Thanks for your message. I have now taught myself numbers by doing patience and I have a photo album with the kids and my husband in it to try and relearn who they all are. I keep getting lost in my home which is hardly a mansion but I am getting some signs made to remind me of my way around. It is so hard.

1 Like

I am very sorry to read this, Jeni. It is terribly disheartening when the medics don’t seem to be paying attention. What is their response to the MRI evidence? Do they think the Tysabri it working? What do they have to suggest about alternatives if it isn’t? I hope that you get a decent discussion with someone soon about what your options are.

1 Like

They said that all of the damage and atrophy must be from before I started tysabri. The MRI was with contrast so my understanding is that enhancing lesions are only a few weeks old? But when I queried this they said give it another 6 months to work. When I asked about worsening symptoms like new numbness or more weakness in something that I had before tysabri, they have said that my problems are functional. I am not choosing to not be able to use my arm or make my eyesight worse. I am so fed up. I never want to go back there again. Sorry for the rant.

2 Likes

Hi Jeni

Have you looked at any of the recent videos or articles by Jon Stone? He’s an expert in FND. This one is particularly relevant

According to him functional issues are not uncommon in people with organic neurological conditions such as MS. But as they are potentially reversible, unlike MS, then it is worth figuring out those that are functional, and then trying to improve them, through specialised physio etc.

There are some dinosaur neurologists who do still think that functional symptoms are psychological, or a personal failing, but it is becoming increasingly clear that this is usually not the case, but that the brain’s wiring gets a bit messed up (the brain is very plastic, and is always changing). Because with MS there is brain damage (demylination etc), the brain will be trying to rewire itself to get round those damaged bits, and also will be dealing with all sorts of strange and changing sensations, so it is not surprising that it sometimes goes wrong. But it does have potential to be corrected, hence the use of physio, biofeedback etc. I hope not all of your neurologist team are dinosaur ones, but amongst them there is someone with more up-to-date knowledge and have a proper FND program to help tackle those ‘functional’ dysfunctions.

1 Like

Thank you so much for this. I will properly review it tomorrow. I have requested copies of all my scans, I am going to put my money were my mouth is and pay to see a private neurologist to get their opinion on whether the Tysabri is working and if not if they have the diagnosis right.

1 Like

Hi Jen, so sorry to hear that you are struggling so much. Unpicking some of what you have put have you got to a point where you are not recognising your husband, children, places all of the time? I ask as if it is intermittent, are you in a relapse or could it be something else. There are other physical conditions that have cognitive problems that are improved by other interventions for example B12 deficiency, thyroid problems, menopause to name just a few. Of course I am not suggesting you have these but can be quickly ruled out by blood tests. I hope you find some answers and the right support that us right for you :blush:

Hi Jen,
I don’t have anything to add in practical terms unfortunately, but just wanted to say that I’m so sorry you are having such a difficult time. I hope that things improve for you and that you have loving family and friends to support you

Xxx

1 Like