Memory issues and MS
One of the symptoms that led my family doctor to ordering a brain MRI w/wo contrast was my recent onset short term memory loss. I have been told in the past that I have "a memory like a steel trap" but, along with other recent onset symptoms, my short term memory is severely affected in the past 8 months. MS was one of the few suggested diagnosis when the MRI was read. My daughter has MS. Is anyone else affected by memory issues?
Hi,
! Memory issues are not unusual when it comes to MS. In fact, memory loss is listed as one of the top cognitive issues that people with MS experience. You are definitely not alone in dealing with this symptom. It is a common topic of conversation within our community. Here's a link to a number of pieces on the topic of memory loss -- https://multiplesclerosis.net/search?s=memory%20loss.
On another note, how are you doing with your MS? Have you and your doctor found a treatment regimen that is working for you? How is your daughter doing? Don't feel like you have to answer these questions if you find them too personal.
Thank you for taking the time to post in this forum and I hope you get more feedback from other community members that have experienced memory loss issues due to their MS.
Best, Erin, MultipleSclerosis.net Team Member.Erin...thanks for your reply!! I think the stress of feeling so lousy and having to wait so long to see the neuro for the first time is taking its toll. It is very hard to try to address all the symptoms (memory loss, agitation, vertigo, double vision (which is very slight, thankfully!), clumsiness, leg pain and weakness, fatigue, etc, etc) when I don't yet have a firm diagnosis and treatment plan. Plus my husband has a potentially serious medical issue that will, at the very least, require surgery...the degree of which is not yet known. Will I be well enough to take care of him AND me?? It is the unknowns that seem to exacerbate the symptoms. 😬
My daughter is doing GREAT! The medication they have her on seems to be doing very well for her and that makes me so happy!!
I just feel grateful that I can come here and exchange experiences with others and get so much support and great information and resources!! ❤, I did notice you commented elsewhere on the site and mentioned you don't have a definitive diagnosis yet. I hope you can see the neuro very soon and at least get a diagnosis so you know what you're dealing with.
And, when it rains, it pours, apparently! I am sorry your husband is dealing with a serious medical issue and facing surgery. I know that can't be easy for either of you!
You're right about the 'unknowns'. I personally call it 'the gray'. I use it to refer to any period of time or situation where it's unknown what will happen next or it's a transition period (for example, you leave one job but haven't started the new one yet). I personally HATE 'the gray'! I would rather have all the cards out on the table and know what I am facing rather than having unknown variables lurking overhead. UGH.
I hope both you and your husband get the answers you need very soon so you can start planning. I hope you have a support system to help you both, as needed.
And I am glad your daughter is on a treatment plan that's working well for you -- that's awesome!
Please feel free to update the community in the coming days/weeks, if you feel comfortable doing so. And keep reaching out if you have questions! We'll do our best to answer them.
Best, Erin, MultipleSclerosis.net Team Member.
So sorry to hear that
. Memory loss has become a big issue for me It definitely contributed to me ending up on disability. In particular, I struggle with short-term issues but certainly some long-term memory problems as well. I like to tell myself that it's not really gone, I just can't access those memories. That doesn't always make me feel good though. I've written some about my experiences here: https://multiplesclerosis.net/living-with-ms/handling-memory-loss and also here: https://multiplesclerosis.net/living-with-ms/my-cognitive-changes-because-of-multiple-sclerosis/ Best of luck, you are definitely not alone. Thank you for the reply and links to your past posts. Great stuff. 👍 I also had no idea that cognitive issues could come along with MS. My daughter who was diagnosed with MS 3 years ago does not (yet) have cognitive issues. Extreme weakness in a leg and an arm (she could barely write!) led to her testing and diagnosis. As I retired early at age 55 (from local government) and had no cognitive symptoms at that time, my career was not affected. But I remarried to someone older than me who was later diagnosed with Sluggish Cognitive Tempo in 2020. He is a mechanical genius...can fix ANYTHING....but everything else (cerebral stuff, paying bills, laundry, cooking, cleaning, doctor appts, kids' birthdays and anniversaries, shopping, etc) falls to me. Now this has become a huge problem. Plus he is being evaluated for stomach cancer now. I totally understand that it is actual physical issues in our brains that are affecting our memory and preventing connections from being made, word retrieval, problem solving, etc but so many people just cannot comprehend this and therin lies a huge problem trying to navigate life with MS when other rely on you. I try to explain to my husband WHY I can't do certain things anymore and WHY it leads me to depression, frustration and true despair when I can't live up to prior expectations but am still expected to...but he and others just don't understand it.
I'm sure that's incredibly scary, particularly given your husband's situation. As I mentioned, I deal with these issues often and they do severely impact me. That said, I've still been surviving and have adapted a lot to keep going. I rely very heavily on notes and reminders, as well as following a routine. I think after living with these issues for a bit, you can really learn to adapt. Its not easy and there will always be some frustration, but you can definitely find ways of doing things that work for you, it will just take some experimentation to see what works.
I'd actually forgotten that I had written these, but these are some small things that over time have helped me a lot:
https://multiplesclerosis.net/living-with-ms/tips-cog-fog
https://multiplesclerosis.net/living-with-ms/tips-cognitive-fog
