[Taree]

As far back as I can remember, (though my memory has been a bit dubious of late) I've always been very conscious of spelling and word order...

It now takes me forever to type messages because I have to go back and re-read and mostly edit the words that are back 2 front. It is so frustrating and drives me nuts! Even worse, I find it spilling over into my speech where I join words together to the point where i think I've created a secret language that even I don't understand! Do you think the BIF (FBI) would be interested?:lol:

I have so many blonde moments these days I'm seriously considering dying my hair... Can anyone relate?

 

[Clare.T]

Hello Taree

I was sorry to read that you went inadequately diagnosed for so many years and had a slightly similar exerience myself although I was lucky enough to be on the right treatment albeit it wasn't enough to help the skin symptoms. So maybe that stopped the lupus becoming truly systemic.

I don't know what is causing your 'dyslexia' but it is possible that it is caused by some degree of CNS involvement and when the lupus is properly treated it will improve. We don't care on the forum how people spell or the grammar, in fact it can be a useful indicator of how well people are doing. I have even seen people writing backwards, and several barely legible posts. They aren't aware they are doing it or they know they are struggling and can't help it. Like all lupus symptoms it ranges in severity. I don't know if my recent problems are due to aging or increased or changing disease activity. I make multiple errors even after I have so called edited and sometimes have great difficulty spelling certain words.

Fatigue and stress don't help of course.

Make a copy of somethings you have written and not corrected to get a better idea of what's going on and show to your doctors if need be.
How is the diagnostic process going ? Make sure you have had all the right tests including to detect antiphospholid antibodies which are lupus anti coagulant and anti cardiolipins.


Bye for now
Clare

 

[Katharine]

Hello Taree,

Yes, I too can relate I was having quite a lot of difficulty with those type of problems.

Writing and spelling are a big part of my job as a translator. A while back I was completely unable to translate at all as I couldn't remember more than 3 words at a time in a sentence :hehe: I would ordinarily read a paragraph, understand it, rewrite it in English and then finally check it to be sure I had all the important elements that were in the original text. When you have to reread the same three words ten times over before actually remembering them it is totally hopeless! I also had far more difficulty (and still do to an extent) with remembering spelling and not mixing similar French/English words and their spelling.

I was also finding that when typing here or with friends on msn I seemed to be suffering from typing dyslexia and would often get the letters and words in the wrong order.

I would agree with Clare that tiredness is a very important factor for the so called "brain fog" that we suffer from.
I was lucky after ten months of treatment to suddenly see a huge improvement in my condition which included the brain fog and concentration peoblems largely disappearing. Although I have since been doing a little less well and have flared again, I haven't had a return of the brain fog, something for which I am very grateful. I don't know what it is exactly that causes such things (maybe that CNS involvement) but I am reassured that it does get a degree better with a general improvement.

I have just started working again at a very reduced rate and still find that I have to work with my capacities. What I mean by that is that if I feel "foggy" there is no point whatsoever trying to force myself to do a translation. It will take me ages and be very awkward to read. I just wait until I feel clear headed (often in the late afetrnoon or evening) and work around those blond moments!

I hope that it at least helps to know that you are not alone,
Katharine

 

[gingertoni]

I have similar and have formerly been diagnosed as dyslexic (in December), I have wondered if it is Lupus related, when I am ill things are def. worse. but the dyslexia is always there.

 

[Taree]

Hi all! Thank you so much for your responses!

Sometimes I re-write things a couple of times... I used to get angry at myself but now I try and laugh. I don't sleep well at all and have a constant dull throbbing behind my eyes, normally only one at a time. It's usually when I'm very tired that the throbbing becomes a like a squeezing of the eyeball that I get myself muddled up!

Clare T: At a bit of a catch 22 with d/x prog. Since I'm already d/x with dle the med aids impose a waiting period of up to a year before considering treatment. My plan: taking baby steps starting with my gp (he's fantastic!) Am putting aside money every month in my "treatment fund" and I'm going to take it as it comes. I correct everything! but next time I'll hold myself back and leave my muddled masterpiece as is. Thank you for the idea!

Katharine: Congrats on starting work again! Can't imagine how hectic it must be to have to translate when muddled. thanks for the advice, I'm still learning to pace myself but I guess that'll come in time.

Gingertoni: Sorry to hear bout your dys. I know how difficult it is just having it now and then. If it's any consolation... these replies have taken me forever!!!

Ta again, I hope you all have a fab day!!!

 

[raggedyann1]

Taree,

I am a little confused about your medication situation. Am I understanding correctly that you are currently not on any medication? I know your diagnosis story at age 15 which is just awful but since then you have not been started on anything? What country do you live in? That will help me know what kind of healthcare system you are battling.

Take care,
Karen

 

[Taree]

Hi Raggedyann

You are correct, I am currently not on any medication. I live in South Africa and even though I know it's most likely that my dle has developed into sle, (displaying most of the symptoms) I'm a bit sceptical of a self d/x. I need to know for certain. Sometimes I think ... what if I'm displaying the symptoms but it's something else? Even worse, what if it's all in my mind?
At the moment even though I can realate and respond to threads I feel like a bit of a hanger-on because of my uncertainty.