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and i am really miserable. Started this moring at the gym, and honestly, i do a really good immitation of a brainstem stroke. Except that it is lupus chewing at my brainstem again rather than a stroke. Tongue doesn't move, half my mouth doesn't move, left arm floppy, speech horrendous, half my face weak, etc etc, same old same old. Oh, my colleagues at work tell me I was really really drowsey (were they trying to wake me up to do some work hahaha - more like send me home)

Long story short that involved my rheumie and my gp (who are both real troopers) I am back home on high dose pred and feeling miserable. I am really lucky actually - my boss took one look at me and said go home, I said no i have to do xyz (and i do - I teach a university class all day tomorrow) and suddenly a whole bunch of people turned up at my desk to help. Someone is teaching my class, and all the other stuff I just had to do walked off my desk.

Actually I have had worse brainstem flares than this, so I am hoping that rituxan (which i had only two months ago) is at least reducing the severity. But I am depressed too, because I have had rituxan so recently that this shouldn't be happening at all, as my b cells are at zero. And honestly, I will be grateful for any movement I get back in my tongue (I only have movement on one side anyway). I know that one day I will end up like this for good, but really the longer away that day is the better i like it.

oh well, the kids just got home and they are cheering me up. I will take some time off work, but got to be back early next week for some meetings I just can't miss

see ya

raglet
 

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Oh Raglet

I am so sorry you have had this to go through. You sound so absolutely amazing and strong that I am not surprised everyone at work kicked in to help you.

Try not to think about work until next week and have a peaceful and healing weekend.

Sending you lots of gentle hugs :hug:and positive thoughts :flowery:that your brain stem activity misbehaviour settles down.

Much love
Sara
 

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Oh dear Raglet (((((((((hugs)))))))))

I'm sorry this is happening again and, as you said, so quickly after your last rituxan treatment. I can't say any more, I think it all defies words at a certain point :(

It sounds like you are surrounded by so many wonderful people, the docs, the kids and hey even a nice boss!!

sending hugs, lots of chocolates and the best of wishes for a speedy "back to as normal as possible"

:grouphug2:
Katharine
 

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Discussion Starter #4
Thanks guys - I really appreciate your posts.

I have discovered I can move my tongue a little, but not in useful directions. I am talking by 'tucking my tongue' behind my teeth, which speech therapists hate as it limits movement, but seeing I can't get my tongue out beyond my teeth there is nothing much I can do about that, and the tip of my tongue hasn't worked for a long time. So tongue tucking isn't limiting the movement of my tongue (seeing it hardly moves), it is just giving me some extra tension in my tongue which is helpful for speech.

I really really really really didn't want to test the range of motion (or rather lack of it) in my tongue, but last night I decided I had to. It's weird going to the doc with a tongue like mine - to test range of motion they always have you poke it out, well that hasn't been a possibility for me for a long time. So it all gets a bit tricky. And it's so obvious by my speech that my tongue has got worse, that I managed to duck formal testing yesterday.

So last night sitting on the couch I decided I had to stop being such a wimp and see what I could do with my tongue. I tried to do that 'side to side' thing they usually get you to do with your tongue poking out. Well I tried to move my tongue to one side (ultra slow motion, it just doesn't happen fast) and I thought 'where the heck has my tongue gone?'. All I could feel was this big empty cavity in my mouth. So I put my finger into my mouth and my tongue was rolled back up by my soft palate - who knows what it was doing up there but that certainly wasn't where I was trying to send it. But everytime I try, I get the same result, so I am just keeping using the 'tongue tuck' thing so I can at least talk although it sounds pretty dismal.

I know that when I talk about all this stuff that nobody has a clue what I am on about, but it still helps me to say it as it is pretty lonely stuff to have such weird stuff going on. Even my docs are mostly pretty clueless, as having this sort of damage with lupus is very unusual.

Oh well, that's about it, at least i am not off trying to teach my class today, so i feel very lucky about that. Now that i have got over the drowseyness my cognitive functioning doesn't seem to have been hit so that is good too.

cheers

raglet
 

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I wish you didn't have to go through all this Raglet! What you say does remind me a lot of what my grandmother has gone through. She's had 4 strokes and recovered very well from them so far (we'll see how far she recovers after her last one last month). She even had a brainstem stroke so what you are saying is ringing bells with me in terms of what I've seen my Grandma go through in the last 10+ years.

I hope you're not having any trouble eating - that was about the only thing that ticked my Grandma off was when they put her on liquified foods only due to risk of aspiration pneumonia. But I think you two have very similar personalities in that you use everything you experience to fight back harder and win ;)

Take care...
 

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Discussion Starter #6
Maia I have been really lucky this time that my swallowing hasn't deteriorated further. It has been affected by other brainstem episodes so i do have some damage. I am feeling more hopeful today as i am usually the worst i am going to be within the first 24 hours so fingers crossed that is true this time. I did have one very hungry day in hospital once when they wouldn't let me eat until my swallowing was assessed - then of course the speech therapist didn't turn up to assess my swallowing so I got to stay hungry until the next day. Typical of our local hospital, which is why i stay away from it.

Hope your grandmother is recovering well from her last stroke

cheers

raglet
 

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((((((( Raglet ))))) It's just not right that you have to go through this!:mad: I feel angry and .... angry when I think about it. You're smart and kind and a heck of a fighter. All that I've read about lupus, even CNS lupus, I've never seen reference to the kind of symptoms you have. Show-off!:wink2:

Seriously, I wish I could help. I wish I could take away all the bad things happening to people on this board. And others too. Let me be God for a day....

Hugs,
Sunny
 
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