I'm new here so at the beginning I should say hello! I posted something as a reply to the old conversation but then noticed it was really old... So here is my question/comment/need to vent:
I've been diagnosed with MS 6 (or maybe 7) years ago and have been on interferon ever since. My MS seems to be more cognitive than physical (I'm almost fine physically, never had major issues).
My neuro suggested recently that my MS moved from RR to Secondary progressive and it freaks me out (but it really seems I had a long-lasting one relapse for a while). I'm to start tysabri soon as it might be more efficient on cognitive problems (any thought here?)
But to my problems - major thing is that I'm trying to finish my PhD which means that the main thing I need to work is my brain ;/. I suffer from serious fatigue, vertigo, dizziness, and lightheadedness (yap, it's all "in my head"). I've used to be a rather bright kid which is not a case any longer (and not only the part of being a kid - I'm 32). My concentration spam is really short, I forget things I read even before I finish reading them. And of course memory - I read things over and over again not remembering I've already read them (I take notes that's how I know).
I have no idea what to do; I think I entered the constant panic mode. I somehow need to get through this and finish my dissertation. And there is also explaining WHY I'm not done yet (it's taking me forever). I think it's time to tell my advisor I have MS (haven't done it yet - I honestly hoped I could menage).
Do you think it's common to have MS developing only (or mainly) in cognitive way? Sometimes I think that I'm just lazy or getting crazy or developing hypochondria... My brain is/was my main asset and seeing it deteriorate just freaks me out :(.
Sorry for the long post but I had to vent (it's so difficult to tell people that you're not just making it up; if it cannot be seen it doesn't exist)
Thank you for sharing,
One of my first problems with MS as a child was cognitive. I find it is worse when I am stressed. I find that if I try to relax and not rely on notes, but pay close attention I do better. I record things or take notes as a back up. I really have to really stay focused and pretend it is my one and only chance at the information. I had to report on a rally on Saturday and I am surprised how much I really remember if I relax.
For me over the years it is like my mind is a super computer which runs slower and slower. If I thing too hard and get stressed I actually get a headache. I cut myself a break about the odd path it takes with words etc.
The more tired or stressed the worse it gets. I also have to give off the cuff political speeches to state and federal politicians. I keep it simple and do not worry about it and it comes out fine.
I guess I am luckier than some because I could not read into College and could not follow directions. I have learned to compensate with out knowing it. I process things later.
I work on things first thing in the morning or after a nap when I am rested. Nutrition is also important. I slept poorly and ate junk in graduate school which was not good.
I did not know I had MS in Grad school and was really hard on myself. I dropped out because I did not understand why I was so smart and yet so cognitively stupid. I wish I had known and had given myself a break. I might have finished school. But then again my life would have been different.
I have had MS for 46 years and although my brain is slower it still works pretty well if I am not so hard on myself about it.
Welcome - I feel mine right in my brain too. I have some chronic physical happenings, but what brings me down most is the brain delay. People that don't know - don't notice. Not sure if that's a good thing or bad, but it sure does come with it's downside.
I'm on an interferon too - Rebif. Sorry for the potential SPMS. I will bump up a discussion on Tysabri for you - we do have members on the forum on it.
As the wife of a phD as well as friend to many others, first let me also assure you that even though you might be one of the few with MS, you are definitely NOT alone with disorientation, anxiety and the overwhelming feeling of HOW THE HECK AM I EVER GOING TO FINISH THIS?!?!? It's something I've watched almost everyone on that tract go through at the end.
That being said, I too have experienced cognitive issues much more severely than the physical thus far and it's HARD when you're used to relying on easy access to an internal web of resources and info and connections. It's so strange, feeling lost in my own brain and at the same time cognizant of that fact. It's as though I used to have a clean, organized room of file cabinets and I could just zip in and retrieve things whenever I pleased. Now I get stuck at the doorway, overwhelmed because someone went in and trashed the room and files are thrown everywhere and I don't know where to look anymore.
Kasia, I also have cognitive problems dragging me down. I could have written your post (except for the PhD program part :). Memory, attention, comprehension, verbal fluency... And just plain old confusion sometimes. Memory has been the worst, though. Sometimes I wonder if I have [very] early Alzheimer's... until I remember those MS lesions on my brain.
And like Shell, people who don't know, don't notice. New friends absolutely don't notice. They don't know that I used to be brilliant. Old friends just look at me with tears in their eyes.
I'm a religious person, and yesterday was the first time I had difficulty understanding the scriptures. I kept reading the same verse, but it seemed like I would forget the beginning of a sentence before I had finished reading it.
And I'm 33. I don't even want to imagine 10 years or 30 years from now.
It's great that I can take gabapentin to make my feet feel like they're not made of fire. What I want is something I can take to make my brain feel like it's not made of mud.
You and I sound very similar in the way the MS is progressing. I am still mobile, but do have many physical symptoms--mostly pain and spasticity. However, the biggest complaint is the mental/cognitive issues and fatigue. I am on a generic form of Provigil. My insurance won't cover Provigil so I get the medicine through a Canadian pharmacy (medicine made in India). This medicine is wonderful and works as well as the Provigil did.
For the memory issues, the doctor just prescribed my Aricept. I haven't started it yet, but I am very hopeful that it will help me. My memory problems are pretty severe. Maybe you can ask your neuro about Provigil, Nuvigil, or Aricept ????
And I'll again say something awful: I'm glad I'm not alone! I know how horrible it is to be physically tormented by MS and don't wish it to anyone but it is really terrifying when you see your brain disappearing (one gets really used to having it working..).
And then there is a problem of explaining others that you don't feel well. Having MS pain is not visible or easy to understand - what do you say? Well, it hurts but what and where and how? It's different than having broken leg. Or vision problems - being bling in one eye is not visible. I'm not even going into all cognitive issues: you tell someone your memory is not that good you hear it happens to everyone or it's age (I'm 32 for god's sake!) You can't recall words - well, it's normal and everybody has it sometimes. So I basically stopped even trying to tell anyone. And I'm just living alone freaking out in my head.
So thank you so much for being here; you might see me posting long essays when I need to vent and cry out to someone (feel free to skip them :)) I'll also read other posts to remember that I'm not the only one and am not just going crazy.
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