My cognition issues are far worse than my physical symptoms. Is that unusual? I am grateful for that, but since mental issues are invisible, it is hard to know if I am relapsing, remitting, or just getting steadily worse. None of my doctors seem to know anything, which is scary.
My family doesn't take my MS seriously because I have had undiagnosed MS for decades. I have had these symptoms so long that my memory, mood, and thinking problems are unsurprising. Does anyone have that issue?
I am so sorry that you dont have a family team. i too have been attacked by my sister, cornered by relatives....and some you just gotta let go because of yourself. Some people wont acknowledge illness of anything..if its not real they wont get it or have to do anything about it. Ive even been told..show me your MRI? now really.....do i need those people? i admit it hurts. ive even gotten MS booklets and passed them on...Nope wont have it. Im not sure when Im flat for long period of times or falling slurring of words depression? oh yes i want all that and more.....i take my day and TRI to start over from the previous day....leave toxicity where possible. but in your heart try to fill with joy..that is more healing i find. you be your own best friend. i feel sorry for relatives etc that dont see the blessing of opportunity to serve and love.
hi TK, i have experienced similar and identical issues. When my MS was invisible i couldn't convince people i needed help due to memory issues. I would suggest you get a neuro cognitive exam from a neuro psychologist. at least it will give you a baseline if you have further mental changes. PS, if your docs don't know find a doc you trust, who specializes in MS.
Tha ks, Sandydemop! I got a formal memory test from a neuropsychologist in October. He was the first on to have concrete evidence of MS, followed by MRIs and a spinal tap.
What is frustrating is that several parts of my brain work just fine. I can have a mostly normal conversation as long as its not to complex. Visual and spatial seem unafected. But making plans, completing projects, anxiety, insomnia,finding specific words--those all terrible. I am useless at work. Even after the MS tests came back positive, my wife thinks of me as an irresponsible slacker.
I feel a little guilty about having MS with mild physical symptoms, but becoming senile before my time is almost unbearable.
hi TK, no need to feel guilty. the damage we see depends on where the lesions are. i understand feeling useless at work. I had to leave my full time job (not fired exactly but let go) but was not exactly disabled. i went to part time and finally had to start my own business out of necessity or go on disability. working for myself lets me arrange my schedule and delegate out the things i can't do.
I have the exact same issues! Weird and frustrating. Things that seem simple to everyone else can be an internal struggle. I certainly can't accomplish things like I used to. I don't know how to tell if I'm declining. I've had the neuro tests... I count my blessings, but... I'm lucky my hubby sees it more than I do. You are not a slacker. 
Yes, I just told my neuro today that since last appointment, physically I feel stable but cognitively I have declined.
I see where MS symptoms could take a long time to diagnose. If you have a Neurologist I'm sure they could tell. A diagnosis of MS based on a MRI or a spinal tap may confirm MS. There is also some other non-medical test that could be done I understand.
youtube.com/watch?v=licJNif... 2 minute video
explaining invisible symptoms from Dr. Rose Kalb Can Do MS
I saw a new neuro psychologist and she just totally reversed the first one. The first one saw my cognitive issues as definitively MS. The new one says it's all stress. The new study came about from me complaining that I thought my cognitive functions were declining. I have no problem with stress making things worse, but I definitely object to them being the cause. I've had cognitive issues even when things were going good and I considered things for the most part stress free. My neuro only sees the physical issues as being MS, so I guess I'm on my own. I get VA care so I really can't get different doctors.
My mental is more bothersome than my physical self. Neither is great but it is what it is.
Get diagnosed and we will go from there. Anything at this point is just an assumption or guess. nuerologist are highly trained, we are not
Others have already posted great ideas, but just know you have one more person in your corner.
It's really tough when those we love and hope would understand best simply don't. I think (hope) that it's mostly due to ignorance. With other, more prevalent diseases, there is at least a little understanding of what that disease does to us. But few people know anything about MS and can't relate at all. I do hope they would be willing to at least read something brief that explains these cognitive problems and then have compassion for something that is so troubling to you.
If they won't, you can weed out those who dismiss you and come here for understanding.
how do you know you are getting worse?
I was diagnosed 4 years ago with relapsing remitting. In the MS community no one ever talks about lesions black holes or myelin. Why!
MS getting worse 😢
