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Discussion Starter · #1 ·
Dear all.
Well i don't really know where to start really.
I have Lupus Discoid Lupus Firbramialga, osteoparosis in my spine, asthama and on and on.
I have had Lupus for nearly 3 years now and am on so many tablets there are to many to say! here are a few, Morphine 60mgs in the day, 30mg at night, Amatriptaline 110mg at night, 10mgs in the morning Planqanil 400mg day one in the morning one at night, thats just a few oh not forgetting the Diazipam for sleeping/leg spasam etc etc.
What i have found now is i has an M.R.I when i first went into hospital the very first time, they told me it was fine. I than had an appointment with Dr Edwards my consultant, because i have a right side weakness he wanted another M.R.I. done. i had an apointment 1 week later to have my scan, i thought that he had put urgent on it, being that quick!
Since having this other one done i have had the most terrible head pains, and my short term memory is just awful, i could tell you about last yr but ask me what i did yesterday and i can't answer it.
As well as that when they gave me my results of the M.R.I. test this time they said that i have 2 white marks?? on the front right lobe, but not to worry as they were no bigger than they where in my last M.R.I whats this all about?? they told me the last one was fine, and now this? i want some answers really and am going to call the hospital and speak to my nurse and get her to explain this to me, qs i just don't know what to think anymore, is it the Lupus attacking my brain, or when i very first went into hospital all of my left side had gone face and all as if i had a stroke, maybe then i did have one?? whet they are saying is they don't know why the 'white marks' in my brain are on thr right side which would mean that i would have a left sid weekness, as it is it's on my right side, from top to toe, anyone else had anything like this?? it's really on my mind now, and i'm scared that there's something going on that there not telling me, and the memory loss to well........... so sorry if i have gone on to much, but wanted to write as much as possible so if anyone reads this they will get a good idea of my case.
I'm also in great pain with my joints, my back is the worst, maybe because of the osteoparosisin my spine?
Well thats my story, would be glad if one of you on this site could give me some advice.
So thanx for reading this and hope that you all keep well
love and hugs to u all
Debbi
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Debbie, I'm really not qualified to tell you what's going on, but I can tell you that lupus can indeed cause the stroke-like symptoms you have, because I have the same and my RD blames it on lupus. And many of us here have problems with memory loss too. That also can be lupus related. Wish I could offer more help, but I'm sure someone out there will be able to assist you.
 

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Hello Debbi,

Many here on the boards suffer from memory loss and headaches. I am among those even if I am enjoying a wonderful memory-full and pain-free period right now.

The causes for these kind of problems can be so various that it is impossible to say what might be causing it. Obviously it is important to get the examinations done such as the MRI and EEG and discuss those with your doctor.

Many people may have "clear" examinations and still be suffering from memory loss and headaches which are extremely distressing (and I have found at times dangerous).

It is then very difficult for the docs to know the cause and treating it may be a question of trial and error.

I think the first thing is to actually get them to take it seriously. Saying to a doc that you have memory problems and headaches is very vague and they are not the ones suffering from them. Before I could get anyone to take it seriously I had to list several concrete examples of things I had done (such as not be able to remember what side of the road to drive on while actually driving) before anyone took it seriously.

For me there could have been three causes. First of all, I do suffer from a degree of brain fog and headaches when my disease activity is not controlled, secondly I have strongly suspected APS and thirdly, lupus vasculitis. It is actually impossible to know which of those was causing my recent problems but finally my GP said that we would try a med which acts on the vascular system and, conveniently, has a blood thinning effect too. That worked for me and pretty spectacularly too.

What I'm trying to say here is that it may "just" be lupus fog but it could be a number of other things and they need to be looked into. If everything is clear on examinations then you need to really pester your docs until they actually listen and try something to help.

Katharine
 

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Debbie, i am one who's brain as been effected long and short tems memory probs, i had tro go see a neurophycologist, they did test on me, had to keep going back and too,

i can tell thouhg when things are not going right, as i cant think how to write spell think, then other days im not so bad, just take one day at a time, i dont take anything any more for granted, and yes it is scarey, when you know things are getting mushed as i call it lol!!What have the dos said is your cause?? the sle as done mine, have had EEG's mri's and other procedures,,


take care Lin xx
 

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Much like you, I've had spells of much worse memory problems. I've also had two MRI's, the first one had a white spot as you describe (technically and area of increased FLAIR on MRI with contrast), and the second one had a more diffuse area of white which they thought might be due to extraneous factors. I was also told that my first MRI was essentially normal, and that many "normal" people will have areas like that especially as they age.

Overall, I was reassured by it but I had to wonder if it was so normal for someone MY age to get that (mid 30s). I actually got copies of my MRI reports, so that I know exactly what was and wasn't found and what their thoughts were on it. It's very frustrating to be told one thing and then find out a long time later something else. I'm guessing they thought those two white spots were a variant of normal as many people can get them who appear to be healthy/normal. And it's possible that it is, or possible that it is due to lupus in some way directly or indirectly.

Your situation with the one sided weakness is different than mine though, and I can see your cause for concern. I would write down all your questions you have, and take that list with you to the doctor that will interpret/review your MRI results. Go through them one by one until they are all answered. Good luck, I hope whatever is causing it that it will improve soon on it's own or through a treatment change.
 

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Discussion Starter · #6 ·
hello!

well thanks for all of you support on this matter, as i said i have to go bk on the 27th this month so will ask lotsa questions.
Apart from that i called my nurse today and she will call me by this weekend, and i will talk it over with her.
I will of course let u all know what happens.
Thank you for caring and reading my post.
Warm wishes to you all
Debbi.
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hi there

there is a wide range of what is considered normal on a mri. My doctor tells me that we all pick up 'spots' on our brain as we age, and this aging starts a lot earlier that any of us would like to think it does.

The main thing to do is to have one doctor you trust look at your MRI reports and then discuss it with them. Reading a MRI report yourself is a mistake in my opinion as it will say all sorts of things which sound dreadful but may be quite normal (individual variation). It is a very specialised thing.

do you have a neuro who you can discuss both the scans with ? My rheumie is always interested in my MRI's, but she is the first to say she doesn't know much about how to interpret them. I use my neuro for that.

Best of luck with your symptoms - hope you have a neuro on board, otherwise getting one could be a good plan.

all the best

raglet
 

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Discussion Starter · #8 ·
Thank you

Hello to you all again.
Well to sum things up my nurse has still not given me a call yet, although she maybe away, they are alowed i suppose!
I have found what u all have had to say very interesting, and yes i have to see a neuro doc at some stage, maybe they will sort things out for me?
I must say though i'm getting more and more worried about this, i speak to my friends and say to them, 'if i'v told u this before then just say that i have or i haven't.
I can't help but feel stressed out with it (all on the quiet though) my husband is one in a million, but even he needs some space sometimes bless him :):)
I tell you how bad it's got i went to bed last night, remembered that i needed a drink, my hubby woke me up and i still had the bottle of drink in my hand while i was asleep, and yep was wet through, this is maddness really, but i do think that the Lupus is the cause of all this,it's just happened really fast thats all........i even get in my car when i can, and have to think how to drive, now that is sad :sad::sad: anyways thank you all for being there and giving me some advice, i also lose my spelling it's really bad now to, and i have to take 53 tablets a day now, that just seems a fair few again really.
Oh well as i have promised i will let you all know what happens when i have been on the 27th of this month, till then hope you all stay well and talk again really soon
Warm regards
Debbi. ;)
 
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