do think the speech problems is from lupus or meds

[helloos]

I am just throwing my thought on here to you professionals....... style_emoticons/<#EMO_DIR#>/rolleyes.gif

The speech problems I am experience and some of you do too, the forgetting, the not being able to find the words, the switching of the words, making up your words, stuttering, etc.......

We are told for the most part LUPUS CAN CAUSE THIS.

Now, if we know we have Lupus and we are put on meds, say Plaquenil........ is my thought........ how on earth do we know it is not the medicine that is causing it and years down the road the FDA will come out with
Plaquenil detiorates your brain process and cognitive problems and blah blah blah.

I mean is there really any scientific evidence that the Lupus causes it, or can it really be the meds?

I am just thinking for myself and maybe many of you can agree after thinking about it, what if they are nuts and have it all wrong?

Your thoughts appeciated of course. And before anyone says "don't stress about it" I am not stressing, or worrying about it, cause i need the med, just thought about it.

P.S. Another episode I laughed about. I am playing a game of pool with hubby, he says the chalk is over there, I say " I know where it is, I work here". I started laughing.... I mean I LIVE here, but then said "hey I actually do work here too"
Yesterday my son was outside and I rambled my words on and he laughed and laughed and I said if I have something wrong with my brain would you make fun of me? He said no, but you don't, I said maybe I do, he said are you for real, I said yes, maybe it caused by everything. He said can that happen, I say yes, I read it can. Then I am in the kitchen and my hubby says who turned the fan off? I said " I shut the... I shut the..... I shut the light off. Everyone bursted out laughing and so did I. Ok, I guess I find some humor now in it, but that is just a few of what happens in one day.

[Lily]

Hi paula,

How do I know the meds arent causing it............. I had it long before I was diagnosed & started on any meds................. this brain fog style_emoticons/<#EMO_DIR#>/wacko.gif And it was far worse than it is now.

My husbands friends name is David, last night I started tripping over words and called him Ravid, which led to rabbid style_emoticons/<#EMO_DIR#>/laugh.gif and well you can guess the rest, the four of us had a good laugh and play on word for a good 15minutes. If we dont laugh we cry style_emoticons/<#EMO_DIR#>/bigsmile.gif

love
Lily

[debralee]

Hello Paula,

I too have so mush trouble with saying words wromg, or switching words,a dn as ouy can tell I can't spell any more either. This started with me long before I was on any medication or had been dx. As Lily said.......all we can do is laugh at ourselves.

God Bless,
Deb
style_emoticons/<#EMO_DIR#>/wub.gif

[raggedyann1]

Paula,

Mine gets worse in the evening hours. My speech problems can mostly be blamed on the strong narcotic pain meds, the nortryptaline and neurontin. The balance of having manageable pain is more important to me at this time than getting back to normal speech and multi-tasking like I used to. Many of the meds we take have been used for other diseases for long periods of time before they start being used for lupus. So long term issues are pretty well known except for a few drugs.

Take care,
Karen

[LilliesPad]

Hi Paula,
I'm glad you asked this question. I dont think I can give any definate answers as to if it's caused by the meds or not but I have another question for ya'll. I have been having alot of the same issues with speech and thoughts and writing or typing and I've wondered if it's Lupus related or if I've always been this ditzy. Every time I bring up the subject with any of my family members they tell me I'm not having "mind" problems and that everyone looses their train of thought sometimes or gets their words mixed up. And then they proceed to tell me of times when they've done "ditzy" things or said mixed up sentences , etc. My question is are they right? Maybe I have been so worried about loosing my mind to Lupus that I've been overreacting to episodes where I forget my phone number or can't remember where I put the remote and find it in the fridge later while cooking supper.
What are your thoughts on it? style_emoticons/<#EMO_DIR#>/shrug.gif

[Fishaholic]

Mine is sometimes caused by partial seizures. But I get a separate type of mixing my words up which only appears when I'm flaring. It goes away when I increase the meds and the flare comes back under control.

I am lucky that it isn't there all the time, but for me I'd definitely say lupus, not meds. This is just anecdotal personal experience of course.

Another way to know would be to see if other people without lupus but on similar drugs experience these problems or not. Unfortunately I don't know any!

One other point: I know that some of my meds have bad long term side effects. I accept that some of the ones deemed safe right now might not totally be. But that is the price I have to pay for feeling well enough to leave the house. For me it is worth the trade off. Of course, not everyone will feel that way and it depends what symptoms the drugs are causing. I'm just sharing what I personally feel.

Hugs, Sarah.

[Clare.T]

I would say it's highly unlikely it is Plaquenil, because it and the similar drugs have been used for so long against malaria that loss of cognitive ability would surely have been observed. In the same way that these drugs especially Quinacrine ( UK Mepacrine) were observed to help with joint aches and pains as they were being used for other purposes and are known to have the potential to reduce fatigue ( in World War II). Their slight blood thinning properties could also help, as well, I suppose, as their effect in reducing disease activity overall.

A number of drugs are being used these days to help overcome the general ognitive problems in managing everyday life that can be associated with lupus as opposed to neurological problems like strokes : the anti Alzheimer's medicines and some like the narcoleptic type (?) I'm very vague about these but if you google you can get an idea, see as an example

http://www.clinicaltrials.gov/ct/show/NCT0...D719403?order=4 (http://www.clinicaltrials.gov/ct/show/NCT00297284;jsessionid=0E81EFA82EB49D7075E8DC3ABD7 19403?order=4)

There are a number of posts here on the topic. Humour is a way of dealing with it at the personal level and can be useful for lessening the terror we all feel if we think our minds are going.
I know that there are things we can do for ourselves at least to reduce the embarrassment and anoyance with oneself. As a simple example if you can't recall something, a name that you know perfectly well, don't go into panic mode because that will make it even less likely you will remember. The more distressed I am emotionally, fear, depression, anxiety, upset, grief and the more I am concentrating on an activity or planning an event, the more likely I am to forget other things.

A good doctor will be willing to dicuss it,and might refer for testing to see if there is any real basis for what we feel ourselves.

There are many possible physical causes apart from lupus.

Realising that it is a common problem is only comforting up to a point. The trouble with these things, is that we might be that way without lupus - it is a common enough complaint among people who don't have lupus after all.

I always think of a colleague of my husband's who had to take early retirement when diagnosed with dementia. In fact he was suffering from pernicous anemia so B12 deficiency was the cause. It is surprising how often simple explanations are overlooked - another good reason for talking with your doctor about it.

Live in hope

Clare

[Lily]

And it seems we arent alone either style_emoticons/<#EMO_DIR#>/smile.gif We affectionately call it our Lupus Fog, but here's a list of conditions that cause cause cognitive impairment:

http://www.wrongdiagnosis.com/sym/cognitive_impairment.htm

Lupus is well known for it though, which is something most of the medical research has indicated in Lupus patients.

love
Lily

[lisade]

Hi, Everyone has given you good answers already. I just wanted to add that when I began having many of the problems you mentioned I did alot of research on lupus and found that it is well documented that lupus can cause these problems. I also spoke in length to my rheumy who agreed that lupus can cause these problems and were the cause of mine.

I do know that like others mentioned my memory and speech problems are worse when I am tired or more fatigued like in the evening.

I hope this helps..

[chantal]

my brian fog got worse after i started medication, so i thought it was that, thats just my opinion though, man it sux thou style_emoticons/<#EMO_DIR#>/tongue.gif

[frono]

Thanks for the link Lily. Actually it makes me feel better knowing that I'm not losing my mind.

I agree that the general population does have some cognitive impairment just because of stress and other factors but it seems that since Lupus it seems far worse than before.

Sometimes I put words in the wrong order or I have to try really hard just to say a word (stutter). My family and I get a good laugh and go on.

[jane1]

style_emoticons/<#EMO_DIR#>/blink.gif hi...my brain fog started before the meds..it funny if your with people you know...embarrasing otherwise.. style_emoticons/<#EMO_DIR#>/ohmy.gif

jane

[helloos]

Hello everyone.

Thank you for all your responses and links. They were helpful. It just makes me wonder sometimes but you all have valid points.

I think for me, it is worse since being on the meds but also since the diagnosis of Lupus.

I don't think it is a major problem, just that I notice it happens quite frequently now at work and at home.

I am not glad that you all have this problem, but glad to know that you can relate.

Thanks a million.

[tink]

gosh i thought it was just me my hubby drives me nuts this last few weeks correcting me and my words come out wrond .
lol i think you can tell from my post style_emoticons/<#EMO_DIR#>/hyper.gif allso .
buts it is annoying sometimes i get really strange look from strangers i don,t know i have said it wrong style_emoticons/<#EMO_DIR#>/wub.gif tink.