Thinking process

[Manzyb]

I am not one to overreact or try to find things that aren't wrong, but something was brought to my attention tonight.

For the last couple of months, I have noticed that I've been having trouble sometimes getting a thought out of my head. I can start to talk about something and then know exactly what I'm thinking of, but can't get the word out like it is stuck on my tongue or something. It's a bit strange.

Now, I'm always a bit scatter brained, just the way I am. However, my husband said he noticed that this has started to be a lot more noticeable.

We didn't put 2 and 2 together until tonight. Every time before my Tysabri infusions, they always ask me about any mental status changes. Should I bring this up? Originally, I just thought that I was really tired and having trouble putting thoughts together. Now that I've thought about it, could the Tysabri be the problem? I almost feel silly bringing it up at the doctor, but what if it is something to worry about?

 

[Jennifer]

I don't see a problem in bringing it up. I've notice the same thing happening to me and I have no idea what's causing it. I don't take Tysabri though (lots of other stuff, just not that). If someone asked me about it, I'd tell them. Its more than just walking into a room and forgetting why you're there (even though that seems to be happening more often as well). I forget basic concepts and words and even my typing on the computer has been affected (I spell words with the letters all mixed up or leave out words entirely). I've noticed a change in myself within the last couple months. Only difference I have is the increase in 6MP and adding Entocort. Guess I'll also add it to my list of issues for my GI to figure out.

 

[skippy111]

you should deffinately ask your DR..

please read this link http://www.crohnsforum.com/wiki/Tysabri

and also, read about the PML http://www.crohnsforum.com/wiki/PML-Progressive-Multifocal-Leukoencephalopathy

 

[shazz]

I would let them know. If only to reassure you.
It wont hurt to let them know.
Hugs to Sadie bear as always
Xxxxxxxxxxxxx

 

[Manzyb]

It's frustrating, isn't it Crabby? I'll be talking about something and then all of the sudden my friggin mind goes blank and there's nothing there!

Thanks skippy I have read over all of that stuff. i've had 3 infusions so far and they make you read the pamphlet for it every time and ask questions to make sure you understand it. they also take a survey of any mental changes, but I never really even thought to bring it up. I just thought it was from being so tired all the time, but now I'm starting to wonder since my husband even said he's noticed it.

I did test negative for the JC antivirus, so they said my risk of getting PML is pretty much nonexistent, but there are always exceptions to the rule.

I have been a lot more depressed lately, but I am thinking most of that is just from our upcoming move and all these changes going on in our lives right now. Who knows.

I go in Tuesday for my next infusion, will let you know what they say.

 

[stylistgurl]

I'm pretty new to this site, and pretty newly diagnosed. Just the last 2 years, although I have had problems most of my life, dr said it was IBS, now I know it's CD. When I found out I had it, it wasn't that big of a deal I was in the hospital for a couple of days and was told if I take pentasa I would be fine and shouldn't have a problem, when symptoms persisted they gave me steroids, which were kinda annoying, just had my 2nd colonoscopy and now it's worse. I almost feel like I just got diagnosed. I never thought it was even a possibility to be worse. Now I feel like the carpet was just pulled out from under me. Like I have been completely robbed of my life.
I spend every night crying myself to sleep, super angry and sad. I just started reading last night success story one after another, from people sicker than me, so POSITIVE! I don't know how to get there, and cope.

 

[Manzyb]

Hi Stylist. It is hard to deal with at times. Some times, even at my worst I feel the most positive, its crazy. You'll be able to get there. I think we all have our ups and downs, that is just normal. Right now, I'm just having a hard time. With the way I feel, we're moving across country here very soon (actually out to San Diego where you are!) and all kinds of stuff.

I was just putting the depression and the forgetfulness into the context of maybe its the medication causing these problems and maybe its not me being nutso again.

 

[Leebie3]

can't hurt to tell them I get like that a lot of the time but am not taking any IBD drugs. I put mine down to stress and it sounds as though you might have a bit going on stresswise too? xoxo

 

[Beach]

I think one of the odder mental problems I've run into concerns spelling. When the grumpy gut is acting up, I have terrible troubles with spelling. Even in the simplest of words can be a hassle. I haven't done this but it probably would be possible to judge how I'm going to feel for the next few future day by how poorly or well I handle spelling.

I am the only family member with an IBD, but I'm not the only one with spelling difficulties. My father is the same way, and my sister has mentioned she can not spell either. Growing up this drove mom crazy! She was a local spelling champ at her school, and even won a college scholarship where she studied to become an English teacher.

I know from experience, from one of the few times where I was well to the gut and recovered, I could spell most words with ease. During those times when writing, in my minds eye I could see how word are spelled. When ill, the minds eye seems to have wandered off on vacation.

So from my stand point good spelling has to do with a healthy gut. With my sister and father having similar word troubles, I've wondered if I ever figure out which food(s) cause my gut grief, if my sister and father avoided those same foods would their spelling troubles go away? I'm guessing that is the case.

 

[ThatsWhatSheSaid]

This is very interesting to me. I also have issues like this. One day, I swear on my life, I could not spell "you"- I couldn't figure out if it was yuo or you. I am actually an exceptional speller and always have been, probably because I read so much. When that I happened I was so freaked out. It was a few years ago now, in college, but after I had been diagnosed with crohns. Neither way looked right to me, and as I was experiencing it I knew how crazy it was. I've also recently started doing dyslexic type things with numbers. Again, I have always been very intelligent and never had any issues with dyslexia or anything like this until recent years. I got into a great college and did very well. The issues seem to get worse when I feel worse.

Beach- I almost feel like you're spot on with the mind's eye thing.

 

[Manzyb]

With me its not so much typing or spelling things, it is just talking! I feel like an idiot because I just can't get out what I'm thinking half the time. So frustrating!!

 

[Beach]

This is very interesting to me. I also have issues like this. One day, I swear on my life, I could not spell "you"- I couldn't figure out if it was yuo or you. I am actually an exceptional speller and always have been, probably because I read so much. When that I happened I was so freaked out. It was a few years ago now, in college, but after I had been diagnosed with crohns. Neither way looked right to me, and as I was experiencing it I knew how crazy it was. I've also recently started doing dyslexic type things with numbers. Again, I have always been very intelligent and never had any issues with dyslexia or anything like this until recent years. I got into a great college and did very well. The issues seem to get worse when I feel worse.

Beach- I almost feel like you're spot on with the mind's eye thing.

Good to see I'm not alone with the poor spelling and connection to gut health! It really is an odd condition to have. I've not read anyone else write about this. The traditional advice for learning to spell better is to simply practice spelling. That is all you hear. I could study words for hours a day and in the end probably spell just as poorly as when I began studying! But if the gut acts well, spelling become easier to accomplish. Makes me wonder how many other people are the same.

My father can be a bit defensive with poor spelling. And I think my sister can be also but to a lesser degree. Both are highly intelligent. Sister had top grades in school and graduated from the University of Illinois in three years. Dad had an IQ test for the military, and found he had top marks, qualifying him for Officer candidate school, which he went into. When it comes to spelling though, that is our kryptonite! For me, thank god for computers and spell check!

I think the worst spelling error I made was the word cry. I spelled it cri for a school assignment. Looked good, spelled as it sounds, but never lived that one down with friends.

My spelling seems average today, so should be a good couple of days to the gut I'm guessing. :dance:

 

[Beach]

With me its not so much typing or spelling things, it is just talking! I feel like an idiot because I just can't get out what I'm thinking half the time. So frustrating!!

I can have that problem also. It seems related to fatigue for me. Last Friday I had an appointment to meet a farmer and his wife. It wasn't a good day, and found myself not talking all that well. I was happy others were with me when i went to the farm, so i could give myself some cover.

 

[ThatsWhatSheSaid]

Manzyb & Beach, absolutely. I've had the issue verbally expressing myself as well. Again, almost dyslexic....Switch words around (provides a lot of amusement), make up new words by combining two (as though my mind is too fast for my mouth), or just straight up lose a thought. To the point where I get this visual of myself like I am in the pitch dark, kneeling on the ground, feeling for something that ultimately does not exist (the thought that I lost). Clearly, I have a vivid imagination, but that is basically what it is like when it happens to me. It is like everything goes blank. I always blame it on variables, like being tired, meds, not feeling well etc.

 

[Manzyb]

I always related it to being tired or the meds just making me foggy headed. I just dno't understand why it has been so much worse lately. It use to just be every once in a while but now it is pretty much every day. It's a little worrisome that the Tysabri can cause these problems to worsen and permanent. Hopefully its not the medicine, but its not doing much for my Crohn's at the moment, so who knows.

 

[shazz]

I have recently had a few moments wwhere in mmy head I have said something but what comes out my mouth is totally different.
Also like Thatswhatshesaid said I get my words muddled up, put them iin the wrong order and such and also instead of saying something like not this I will say nos or something utterly stupid.
I did put mine down to being on Prednisolone and my recent extra stay in hospital.
Hope it evens out for you ssoon aand you can just put it down to stress and not your meds.
Give Sadie bear a big hug from me, as always. Xxxxxxxxxxxxx