Last reply 2 months ago
Feeling different then everyone

I’ve been hanging out for a bit and just reading the posts. I’m starting to feel like my expierence is so different. So many of you talk about physical issues and need walking assistance. I don’t have that. I was diagnosed 2 years ago. I thought I was having a stroke. My speech and brain suddenly stopped working. They have never fully recovered. I did have arm issues and pain during a new lesion relapse, but that has gone away. My brain malfunction, however, is still with me. I can’t remember, focus, speak correctly, understand people, etc. comprehension is so slow, I feel like I stare through people when they talk to me. I haven’t been able to work. I tried being a hostess in a restaurant, I figured it would be a simple start. I was so wrong. I got to feeling overwhelmed because I couldn’t multitask, and my brain would shut down, I couldn’t talk to people, or run the computer that I ran all week. I’m so ashamed. I feel like I’d rather have numb feet. At least I could work. What employer would hire someone who can’t use their brain? Your brain runs everything…

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


dvtrv
2 months ago

As I’m sure you are well aware, everybody with MS is different.

I had mobility issues in 2011, right eye turned in, limping in my right leg, talking and walking like a drunk.

Since being on Tysabri shortly after diagnosis my mobility has gotten heaps better.

That said;

I can control my bladder, see correctly, have no pain or spasms and only symptom is Fatigue.

People only know I have MS if they’ve been told or I tell them, otherwise you wouldn’t know or suspect.


dvtrv
2 months ago

@marajade

Forgot to start with this…..


dvtrv
2 months ago

@marajade

Apologies, forgot to say that I work 2 hours in the morning 5 days a week as unable to do much more.


bernadette
2 months ago

you are not alone, and you have nothing to feel ashamed about. I noticed cognitive problems about 18 months before i had my first physical one (optic neuritis) I decided in the end i must be having menopausal symptoms and GP put me on HRT. I stopped that when I realised the brain lesions were not that!
Although I have some physical symptoms too the ‘foggy brain’ or ‘cog fog’ or whatever people decide to call it, is the most disabling part of MS as far as i’m concerned. i found it very frustrating and isolating. Fatigue is running a close second at the moment as i am in a flare up. I have long since abandoned any attempts at multi tasking. I try to do one thing at a time and sticking with it. I’m aware that my brain usually only works for a couple of hours first thing in the day, especially when i’m in a flare up (like now!) I hate it !!! but console myself with the knowledge that others rarely notice. Majority of the world fortunately are only interested in themselves… really.
Does your neurologist and/or your MS know about this? Make sure they do and that you are on an appropriate DMD, cognitive changes are important!! Have they offered you a cognitive assessment? It may prove to yourself that you aren’t going mad and you could be offered some cognitive retraining. or you could try the BrainHQ App, i haven’t yet cos i can’t work out how to download it – ha ha. Anything you can do to build your cognitive reserve is what i was advised to do. Even reading is protective for brain plasticity. I’m told.
Avoid disclosing this any more than you have to. In my experience people don’t want to know about it and certainly don’t understand it.
Meditation has helped me, also getting depression effectively treated has helped. Sticking to one notebook instead of numerous post – it notes has too.
good luck in finding what helps you
x


stumbler
2 months ago

@marajade, our brains are working overtime, trying to re-route messages to and from the brain, whilst avoiding the areas of MS damage.

When you add in the rest of the processing our brain performs, i.e. all the sounds, visual images, smells, etc., you can start to appreciate the notion of sensory overload.

So, it’s not a case of how our MS manifests itself, but just that we all have damage which affects our mental processing.

Knowing the problem might give us some ideas how to manage the situation, e.g. scheduling meetings early in the day when we’re more mentally alert and less fatigued.


marajade
2 months ago

@bernadette…thank you. Isolated is a good word. I am in between Neurologists right now, but the last one told me I was lucky I didn’t have many physical symptoms and that life would be great because of it. I was optimistic at first because she said that. After living it for a while, I’m realizing the brain issues are just as debilitating. Now that my balance is back, I’m going to get back into yoga, though on a much smaller scale then I used to. Hopefully that will help. Getting back onto MS meds will help also, I know this, but it didn’t seem enough before in order to work and be productive. And I used to love reading. But when I can’t remember what I’ve read after 1 page, it’s just frustrating now.


cameron
2 months ago

@marajade, I wouldn’t assume that these problems will always be as troubling. A thing I’ve learned is that symptoms CAN change and that lifestyle/healthy habits are key to this. Going on meds, restarting your yoga and looking at any ways you can reduce your stress burden is the way to go. Think of it as re-channelling all those negative thoughts…. I know that none of this is easy or quick, but it will make a difference. In my own case, I know to my cost that deviating from my generally healthy regime causes symptoms. I can get away with it for a few days, but after that the limbs start to tingle, the legs don’t respond very well etc. etc. This wisdom took me many years to work out. You are only a couple of years into this, so don’t beat yourself up! xx


rolly
2 months ago

@marajade, you are absolutely right, the ‘brain issues’, as you call them, are just as debilitating as the physical ones, and i believe that many here are impacted in one way or another. but as someone also mentioned: everyone is different.
my problems started out as being only physical, and it was only at a much later stage that cognitive issues started to affect me. now brain fog, the inability to focus or comprehending, difficulty in putting thoughts to words, etc etc are all part of my daily life. so i absolutely understand where you’re coming from. the thing is that these issues may not be as easy to explain to others (and are certainly much less obvious and not really visible than physical limitations). but that doesn’t mean that many of us don’t suffer from them.


marajade
2 months ago

This might sound insensitive, but the name “cog fog” makes me a little crazy. It makes it seem cute…like it’s a small fleeting symptom that comes and goes. People always say “ oh yeah, that happens to me all the time”.


marajade
2 months ago

@stumbler, thanks for bringing up the sensory overloads. That’s what makes me feel like I’m crazy the most. I’ll be fine, the kids and I walk into a busy mall, and suddenly everything is off. I’m bothered by everything, the noises, the lights, the people walking towards me…I’m suddenly some nut case and feeling buzzed and overwhelmed. My poor teenagers.


stumbler
2 months ago

@marajade , once we’re aware of the potential causes of the problem, then we can take steps to try to work round them (isn’t that an oxymoron?)……. 😉

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.