Can Vasculitus cause you to forget and to mi... - Vasculitis UK
Can Vasculitus cause you to forget and to mispronouce your words get them mixed up, I cant always get all my words out?
What form of vasculitis do you have? I have cerebral vasculitis, isolated to the brain, but causing a huge range of problems for my brain in controlling parts of my body. It also causes significant dementia-like problems, so confusion, memory problems, etc. And, especially when I am more tired, or the inflammation is more out of control, huge problems speaking. Sometimes I can't speak at all. Other times I struggle frequently with my words. It can be embarrassing in public or with strangers. My husband is used to translating my gobbledigook, and always seems to know what I'm struggling to say.
I rarely use the phone now because I find it so difficult to speak, and to hold onto the receiver. Even with a microphone and headphones I get brain tired too quickly, and my speech starts to get (if not already) slurred and muddled.
Not sure, but the Rheumatologist 3 years ago said granuloma something, she wasn't at all helpful, I wont know now until I go to Barts Hospital, I havent been checked in 3 years
John talks of days when his head is full of "cotton wool" this is usually if he is under the weather or has an infection or something along those lines.
Other people who have contacted us who have Vasculitis have also complained of getting their words mixed up, as if the brain is thinking one thing and then their voice says something else. As Vivienne says some types of Vasculitis can cause a huge range of co-ordination problems but sometimes certain medication can cause problems too.
The best thing to do is talk it over with your Vasculitis consultant and GP so they are aware of this problem also to make sure there is no underlying health issues if this has suddenly become a new problem to you.
all the best
Susan
Thanks Susan, the issue seems to be more prominent these past few weeks, maybe it will go, maybe not, Ive got a first appointment at Barts on 14th Feb, been waiting months for a referral, in fact I havent received any form of treatment nor have my levels been checked in 3 years now, but I know it is slowly beginning to return, will mention this when I go, not sure what form I have but the Rhumatologist just muttered granuloma, she was in a hurry and wasnt up to any questions, that was my local hospital, my GP as well as the Rhumatologist said I was too fat to treat (5 years ago I spent 2 years on steroids put on 4 stones) it would make me put on more weight, I tried Naprosyn, they cause a lot of bleeding,
Lack of any treatment sounds really alarming, to be honest. I hope they do more for you this time. I can understand concerns about more steroids causing weight gain, but vasculitis untreated can be incredibly serious. Though you're not sure which form you have, which affects the treatment options. There are other drugs that can be used, depending on the type of vasculitis you have. For example lots of immunosuppression drugs are sometimes referred to as "steroid-sparing" drugs, because they reduce the amount of steroids that need to be used, though they have their own side-effects concerns.
I think your consultant and GP have been appalling I'm afraid. Being left for 3 years post-diagnosis without any monitoring or treatment - eek! I hope you have more success at Barts.
sometimes it seems as if my tounge and teeth get mixed up .and forgetting words, names, and a train of thought has me worried, spelling words on the computor can also be a problem, but it could be my age,, 65 years young. georgia
I also suffer from cotton wool head !t usually get worse as the day goes on .My friends are use to me getting words wrong ,we usually smile about it and my usually saying is OK REWIND .
loosing my train of thought and the spelling problem has been a recent thing ,which is not good as im the speller in our house ,as both my husband and son are dyslexic !!
I have Microscopic polyangiitis during the first 2 years I had trouble with my speech, the words would be in my brain but lost between there & my mouth,
Much improved now that the vasculitis is less active, & the drug input is so much less. I still get the occasional " nast light", perhaps thats old age, I`m 68
Hope all gets sorted out for you soon.
Lest of buck Tony
Hello,
As a was diagnosed with cerebral vasculitis, I often mispronounced/forgot words and had a problem stuttering and slurring words. I worked with a speech and language therapist from November (2011) to today and have seen a marked improvement since my first session.
These are some of the tips my therapist gave to me to combat those "cotton wall" moments (which are prevalent when tired esp.)
- carry a dictionary with me (as I was having spelling problems as well and as an English teacher that was causing me a lot of frustration)
- breathing out when saying certain aggressive starting words (eg. just) - by breathing out when saying the word you are less likely to slur/stutter
- play games like Articulate or Scrabble to practice word finding/spelling
- relaxation helps the speed and clarity of your voice - make sure your shoulders are not tense as this will affect stuttering especially
- PRACTiCE, PRACTICE, PRACTICE!
I know the last sounds obvious but it has been the most useful - I lost loads of confidence speaking because I was constantly met with "What?" or "Pardon?" and I retreated from using the phone almost entirely, but I set myself little goals (to speak to a shop keeper or phone a particular person) and as I completed these tasks my confidence grew. On Friday (while having a rant to my husband!) he started grinning at me and I didn't realise why until he said that in almost 5 minutes I had not slurred/stuttered/forgot words or mispronounced anything and he stated that I "sounded like my old self again."
Definitely treatment will help but hopefully some of these tips might be of use too - good luck with everything and I hope that this info is of some use!
Sarah
See what I mean about spelling, that should be PRACTISE!
Thanks for that advice ShortSarah, a good thing to put into action, will work on this!!
