cognitive symptoms

[saveone]

I am new to the forum.  I am so glad to have found you.  I am at the stage of dx where the doctors say probable MS.  I have been reviewing comments.  It is a comfort to find others who are experiencing the same things.  The cognitive symptoms have been the worst for me.  Somethings I found so weird I thought I had to be imagining them. Especially the typing words that did not resemble anywhere near what I was trying to type and spending 20 to 30 minutes trying to figure out how to spell something.  The thing that has scared me the most is trying to do something I have done hundreds if not thousands of times before and not being able to figure out how to do it.  I just stand there looking at it and I don't know what I am supposed to do.  I am not sure I can figure out how to work the site, i.e. posting journal, time line, etc.  This short entry has been exhausting to get right.  Not sure if I used nouns, verbs etc. in sentences.  I have had to stop so many times to find my thoughts or to fix errors.  Thanks for listening. PS you sound like a very caring group.  Take care and blessings to you.

[jensequitur]

Yup, those timelines can scare the neuros off!  I tried to keep mine to a single page, as people tend to lose interest after the first page.

I can understand your frustration.  My neurologist seems to have skipped all the data and research they've done on MS since 1980.  I feel like I have to do the research myself.  Then I'll tell him about a symptom I'm having, and he'll say "your lesions don't show damage in that area, so that symptom doesn't exist."  WTF?  

I told him about the cognitive impairment, and he blew me off.  So I asked for a neuro-psych exam 'as a baseline for future progression,' and got it.  (Although he wrote on the report that he didn't notice any cognitive problems!  Of course he didn't - he's used to dealing with Alzheimer's patients.)  I'm now diagnosed with mild to moderate cognitive impairment, and I'm taking Aricept for it, which I had to fight to get a prescription for from my neurologist!  

Crazy.

So I can totally relate to what you're going through.  Hang in there!

[saveone]

Thank you so much for your support.  It is so good to talk with others who are having the same problems, thoughts and fears.  I try not to overstress my family too much.  ( I am having great difficulty in choosing which word is right if they sound alike i.e.   write wright and right or to/too- loose/lose/loss)  back to what I was saying.  My youngest son is 19.  He has told his brother when he has spoke of my illness (hate that word) that he doesn't want to talk about it, he can't deal with mom being sick.  I try to reassure them but they are frightened.  The neuros visit was what it always is, more questions and no answers.  I am scheduled to see a neuropsycologist on Oct. 29.  When the neuro sent me to Lexington on Sept 29 for the EPs he listed my diagnosis as demylenating disease.  Now he is listing my dx as progressive memory loss.  Last week when I saw him I gave him a list of symptoms with as much date and times I could remember.  This stuff gradually crept upon me so I don't remember times that well.  Anyways the day I gave it to him he looked aghast. He said - this is data.  It will take me 10 or 15 minutes to read this.  How many pages are here? Four I replied and wanted to add single spaced in 12 point font.  But I didn't, I was nice. So he sent me home until he could read it with instructions to call on Monday to verify he had.  I called and they said come in .  Long story short, I could tell when he opened my chart he had not read it.  He laid it to the side, put his hand on it and said this is not so important.  Well excuse me, I thought, It is not your brain we are talking about.  Sorry just frustrated.  Tomorrow I may not remember his arrogance and if I do I will laugh, tonight I am to tired to care.  I just do not believe you can make a diagnosis without good information.  So I will continue to try to keep the fog clear enough to function and I will silently complain about tripping, falling, forgetting how to pump gas or how to make spegetti or the numerous other issues we face on a daily basis.  Thanks for letting me vent and I believe I will love it here.  I know I love the spell checker- whoever she is.

live love and laugh

PS I found this on the internet.  It has become my motto.

When we are no longer able to change a situation we are challenged to change ourselves. Victor Frankl, psychotherapist, author  and holocaust survivor.

[jensequitur]

'Scuse me... that should be HAVE helped somewhat.  It's that weird homynym problem again - I'll type a word that sounds like the word I want, but it's wrong, and not even notice.

[jensequitur]

Hardest to get through, and scariest, too.  I've always said I can live with stumbling around and dropping stuff, and feeling like I'm drunk... But not being able to think?  Scary!  

I've been taking Aricept, which seems to half helped somewhat, but I'm still having problems with figuring out which item is which on the grocery store shelf, or paying attention when I'm behind the wheel.  Especially these last few days - I don't think I should be driving any more until I'm better.

[humming4u]

welcome to this wonderful place, but sorry for why your here.
please come back and tell us all about your neros visit okay?
I'll be hoping for the best for you, and hoping you have a great doctor!
Cog stuff is the hardest to get through at times,then we get frustrated or confused more, and "What?????" next huh!
I do think that there is therapy that one can take to help, but thats all so far i know.
I find the cog issues  hard to explain to another, and feel its one of thoses you've got to be having it, to understand it.
I also find, that finding our sense of humor in the mists of our struggle, can help.....sounds as if you have that to.
your posting fine!                                        humming4u

[sllowe]

Hi Saveone,

Good luck today at the Dr. today.  

It's really difficult when the body won't do what the mind is thinking naturally.  Hope you are able to relay this to the Dr. and that he or she is good to you today.

Looking forward to hearing how you made out, and having you here with us.

Welcome!
-Shell

[saveone]

Thanks for your welcome.  I have figured some things out.  I did see the welcome.  I just didn't process it for what it was.  Thanks again.  I off to get ready to see the neuro.  Wish me luck.

Peace, love and joy

[Lulu54]

Hi Saveone and welcome to our little safe oasis in the middle of this desert! You did great with your post - don't worry about language and spelling because we all can read it whether its correct or not..... remember our brains work like your! LOL

Instructions for this site at in the very first post at the top of the forum - the title has welcome in it.  You should find lots of helpful things there.  And if you have specific questions just ask - we'll be happy to help out with answers.

Welcome again, Lulu

[saveone]

You're right the cognitive stuff is the pits (took me three tries to get that right) and sometimes it is hoot as in LOL.  When I read your response I couldn't figure out what you meant.  Your sentence...You're right the cog. stuff is the pits.   I read,  you're right the cog. (period)  is the pitts.  Two sentences not one.  I had to laugh when I finally figured it out.  Today has been harsh in the cognitive area.  I copied and pasted your sentence so I wouldn't have to type it.  I knew I could save myself 2 or 3 minutes by not having to type it in.  Every little trick helps.  Thanks for responding.  I look forward to getting to know everyone.

peace, love and joy

[cjacks]

Saveone

Welcome  ..  you did great.

It takes me forever to write a post or response too. You're right the cog. stuff is the pits.
One time when I was really foggy , I was looking at an orange for five or ten minutes and just seeing color ,, finally and slowly I began to realize it was round , then a fruit and then I was able to put it all together ..Really freaky   It HAS gotten much better..

There are Health Pages at the top right that are very helpful . I don't know if there are instruction on how to use the site though. Play around..but a warning .. I logged out once and had difficulties getting back in .. couldn't remember password .

The heart at the top MY MEDHELP is were your profile is .  You can sent mess. or notes to others , journal pics. .. Sorry I not so good at this part.. Others will help

Take care and welcome again

Light and love

Jo

[saveone]

Thanks for your welcome.  I had to fix supper, spaghetti, but I had trouble remembering how.  Everyone ate so I guess it was okay.  Didn't see anyone feeding the dogs. tee hee.
Thanks for your welcome.  It took me forever to figure out how to respond.  Does the site have an instruction page?  No kidding!  

peace, love and joy

[young at heart]

SAVEONE,

WELCOME TO OUR CYBER FAMILY,

YOU DO A GREAT JOB POSTING.

MANY HERE CAN RELATE TO THE COGNITIVE ISSUES, THIS HAS BEEN A NEW AND DEVELOPING ISSUE WITH ME.

YOU EXPLAINED IT WELL THINGS I'VE DONE FOR YEARS ARE A STRUGGLE ,I HAVE TO THINK  ABOUT IT AND ITS STILL WRONG.

ITS FRUSTRATING AND FAMILY MEMBERS CAN GET QUITE FRUSTRATED TO.

ONCE AGAIN WELCOME.

T-LYNN