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Corella
07-19-2011, 07:10 AM
For ages now, since last year I think, I have been getting my sentences the wrong way round - words totally back to front said so fluently that you can barely notice it. I notice it the minute it leaves my mouth and think 'Jesus I hope noone heard that' - except my Dad picks up on it.

If I go to a toilet in a pub, I forget which direction I have come in and sometimes when I drive home I panic as I suddenly dont recognise where I am and then it comes back to me.

This morning I forgot which train stop I should get off at and ended up getting off at Perth instead of the station before it, yes
the 20 min walk was good for my thighs but left me totally exhausted and my muscles so weak I could barely walk properly in the office and the exhaustion that followed that bout of exercise was crippling.

I have also booked an emergency appointment with the optician as my vision is blurry and my eyes are so dry and puffy so he is going to check them out and hopefully give some direction to the rheumy that I am due to (finally) see on Wed next
week.

I forget what words I want to say, I cant even compare it to the inability to concentrate because my mind goes blank when I want to remember simple words or a direction of where I am meant to be walking/driving.

What is happening to me? I dont want to be ill, I want my bloods to be normal but I want to know I am not going mad. How can this happen to my head or is it all in my head? It comes out of the blue, I could be explaining something and I cant remember.

Today at work I was doing some scanning which I do every day and several times a day and I forgot how to do it, I stared at the photocopier for ages and a girl asked if I was OK and I made a joke of it so she helped me.

And my bloody feet are sore again and I have just taken panadene forte, the steroids stopped the pain for a bit but now its
coming back.

You guys are the only ones that understand, you are like my second family. I cannot wait till next Wednesday and if this
rheumy treats me like the last one, I shall remove my bra and throttle him with it.

Peridot20_Gem
07-19-2011, 07:20 AM
Hello Sam,

I'm hoping myself you have'nt got Lupus but it could possibly be an Autoimmune Disease linked to your symptoms and roll on next wednesday and for christ sake when that day comes keep carm Sam and don't worry about him being in the same department as the other one, as he's the head one you said and you may get furthur but i do suggest what you've written here...copy and paste into your notepad on your pc and save it as a file and if you can't on yours another member of family or friends who can print it off because what you've put is'nt explaining something to the specialist nothing is.

Everything your going through we all experience and sometimes it can make you get mad with yourself because it makes you feel like your nuts or losing the plot but you are experiencing what a large majority of us go through.

Hugzzzzzzz to you Terry xxxx

Corella
07-19-2011, 07:23 AM
Yep I am going to make notes that is for sure.

I am quite proud of myself tonight as I have managed to do some homework, I am still hugely behind and the deadline is approaching purely for me to pass but little steps and all that.

I also have a picture of the blood spots on my thighs for him. I have the rash on my neck but not on my face so not sure if its worth photographing and my eyes are dry, my lips even more so but not so much the inside of my mouth. Oh and I am a bit dry 'down below' which I am SO not happy about.


Hello Sam,

I'm hoping myself you have'nt got Lupus but it could possibly be an Autoimmune Disease linked to your symptoms and roll on next wednesday and for christ sake when that day comes keep carm Sam and don't worry about him being in the same department as the other one, as he's the head one you said and you may get furthur but i do suggest what you've written here...copy and paste into your notepad on your pc and save it as a file and if you can't on yours another member of family or friends who can print it off because if this what you've put is'nt explaining something to the specialist nothing is.

Everything your going through we all experience and sometimes it can make you get mad with yourself because it makes you feel like your nuts or losing the plot but you are experiencing what a large majority of us go through.

Hugzzzzzzz to you Terry xxxx

lizbond36
07-19-2011, 07:33 AM
I deal with what your dealing with, I hope you don't have Lupus. I thought I don't have this even my doctor told me I don't have the common sign. But after all of the test come back three of them Postive for Lupus. I know my life was over, I was hoping I found that pill that give back my legs, hands, arms ETC. But I have know understand it and I won't let Lupus win and trying to get my life back. I accept I have 4 legs ( Crutches) I have my chair for my shower. I learn to live with lupus with a little help.

Please understand what your going though isn't in your head, I had many doctors tell me that and I give up for years. Tell I search for what was wrong with me. Now after 7 years I know what it is and I can try to move on.

Hugs
Liz

Peridot20_Gem
07-19-2011, 07:39 AM
Yep I am going to make notes that is for sure.

I am quite proud of myself tonight as I have managed to do some homework, I am still hugely behind and the deadline is approaching purely for me to pass but little steps and all that.

I also have a picture of the blood spots on my thighs for him. I have the rash on my neck but not on my face so not sure if its worth photographing and my eyes are dry, my lips even more so but not so much the inside of my mouth. Oh and I am a bit dry 'down below' which I am SO not happy about.Oh i am pleased you taking notes and what you've just put in your thread as explained in one go, what you've been explaining on and off for a while but never really throwed it together like this one.

Nice to hear you've managed to catch up on at least some work but that's better than nothing Sam at least what you've done as helped.

Oh all these pic's will go a long way and if you are taken seriously and fingers crossed for you mate...lets hope a Dermo gets involved along the way.

Terry xxx

ritzbit
07-19-2011, 07:42 AM
Have you looked at info about Sjogrens? Some of your problems made me think of that. http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms I hope you have luck at your appointment and get some help with all the things you have going on right now!

Peridot20_Gem
07-19-2011, 05:13 PM
Hello Sam,

How you feeling now and did you look at the link about sjogren's as the disease is'nt all about dry eyes and mouth, there's alot more to it.

Terry xxx

tgal
07-19-2011, 07:11 PM
For ages now, since last year I think, I have been getting my sentences the wrong way round - words totally back to front said so fluently that you can barely notice it. I notice it the minute it leaves my mouth and think 'Jesus I hope noone heard that' - except my Dad picks up on it.

If I go to a toilet in a pub, I forget which direction I have come in and sometimes when I drive home I panic as I suddenly dont recognise where I am and then it comes back to me.

This morning I forgot which train stop I should get off at and ended up getting off at Perth instead of the station before it, yes
the 20 min walk was good for my thighs but left me totally exhausted and my muscles so weak I could barely walk properly in the office and the exhaustion that followed that bout of exercise was crippling.

I have also booked an emergency appointment with the optician as my vision is blurry and my eyes are so dry and puffy so he is going to check them out and hopefully give some direction to the rheumy that I am due to (finally) see on Wed next
week.

I forget what words I want to say, I cant even compare it to the inability to concentrate because my mind goes blank when I want to remember simple words or a direction of where I am meant to be walking/driving.

What is happening to me? I dont want to be ill, I want my bloods to be normal but I want to know I am not going mad. How can this happen to my head or is it all in my head? It comes out of the blue, I could be explaining something and I cant remember.

Today at work I was doing some scanning which I do every day and several times a day and I forgot how to do it, I stared at the photocopier for ages and a girl asked if I was OK and I made a joke of it so she helped me.

And my bloody feet are sore again and I have just taken panadene forte, the steroids stopped the pain for a bit but now its
coming back.

You guys are the only ones that understand, you are like my second family. I cannot wait till next Wednesday and if this
rheumy treats me like the last one, I shall remove my bra and throttle him with it.

Hi there,

I understand exactly what you are going through. I "lose words" so often that my daughter says it is like playing charades around here. I KNOW the word I want but I can't "find it". When I was still working I would occasionally just yell a word at for no reason. Sitting at a table with my daughter one day and I yell out "YELLOW". everyone looked around and I had no idea why I did that!

Things that I used to do daily I can no longer remember how to do. I can't drive anywhere (not only because of the seizures this lovely disease gave me) because I can't find my way back. I have been in the middle of a grocery store and began to panic because I don't know where I am or what I am looking for.

Please make sure you go over everything with your doctor. You really need to see a neurologist to discuss the cognitive issues but, until then, tell any doctor you go to!

Elo
07-19-2011, 07:19 PM
Hihi - just wanted to pop in quickly and say that that sounds like brain fog to me (: It's scary, and annoying, and infuriating... but amusing at times as well. I figured i'd drop you the link to the "you know you have brain fog when.." forum, so you can see how many others deal with the same thing - plus it's pretty funny to look at, hehe.
http://forum.wehavelupus.com/showthread.php?7214-You-Know-You-Have-Brain-Fog-When...

Best of luck on all your tests...remember, getting diagnosed is just getting a name for the problems you already have. So even though it can be super scary, try not to freak out too much.

n.mac
07-19-2011, 07:52 PM
hi, I certainly know how you feel. At times I think I must sound like a blithering idiot,very very frustrating.
I'm not sure how much is lupus related,med side effect,old age(boy fifty sounds so much older than forty.nine) or just my personality.
But if it is any comfort it seems to be something we all encounter-just this morning i was driving to work and i realized i was going the wrong way,i had missed my exit-now i don't go the same place every daybut I never used to have problems like this in the past.

tgal
07-19-2011, 08:33 PM
hi, I certainly know how you feel. At times I think I must sound like a blithering idiot,very very frustrating.
I'm not sure how much is lupus related,med side effect,old age(boy fifty sounds so much older than forty.nine) or just my personality.
But if it is any comfort it seems to be something we all encounter-just this morning i was driving to work and i realized i was going the wrong way,i had missed my exit-now i don't go the same place every daybut I never used to have problems like this in the past.

It is true about brain fog however we should always make sure that our doctors are made aware of what is happening because, for some of us, there hits a time when it is more than that and the disease is causing neurological problems. Just as Lupus can attack the kidneys and heart it can attach the brain. Most of the time it is just the normal brain fog but never take it lightly until you have discussed it with your doctor.

Once you have spoken to the doctor then please join us in the "you might have brainfog if" thread for a ton of laughs!

Corella
07-20-2011, 05:25 AM
Thank you for the link - I had a look, is Sjogren's serious? it doesnt seem as bad as Lupus although the symptoms are similar. Well I fell asleep in training today, I was so exhausted and you know when youa re that tired and you try and stay awake and you start talking crap and say something and then forget what you were saying? Well I did that, the room was spinning, I felt so dizzy as I was that tired and my eyes rolling and the tutor had to ask if I was OK? It was her fault I fell asleep, she was teaching us about work related computer programs and she had a monotone voice.

But today was a day for super exhaustion and pain, my eyes all puffy, I have gained a few pounds in fluid retention on my legs and my eyes look as though I have suitcases under them - not eyebags, they are really puffy.

Well this time next week I will have seen the doctor, although not sure what he will do - he has a full set of blood results but would have thought he would re do them all and maybe add a few.

You know what, I cant remember a time when I wasnt tired but now it is becoming overwhelming and I have so much I want to do but I tell myself 'one more hours sleep will fix it' and I am sleeping my life away. Although I will say my symptoms are not as bad as they were in the summer, which is good, but we are going into Aussie summer now - a couple more months and it will start to really warm up and I am not sure how that will affect me.

Today my eyes are dry - as usual but my mouth isnt but my lips are really dry. its like one big jigsaw puzzle.

lizbond36
07-20-2011, 06:28 AM
I have Lesion in the back of my head, Those are caused my Lupus, now how two Nuro told me nothing was wrong or I hit the back of my head amazed me. I went searching for one yet again. He told me MS is unlikely because MS lesion is in the front. He also told me 80% of people who have Lupus has some known Abnormal scan. But having these in the back of the head can cause Memory, eye trouble, thiking, hearing ETC. Just a thought :-)

Hugs
Liz

steve.b
07-20-2011, 07:26 AM
corrella, i too loose words and have what i call "brain pauses". it is lupus related in my case.

i got so bad, when i was working, i drove in the wrong direction for about 1 hour.
and had no recollection of the trip at all.

it is scary when it happens. i found reducing stress reduced the severity for me.
it did not stop it, but it did reduce the severity.

Peridot20_Gem
07-20-2011, 09:27 AM
Thank you for the link - I had a look, is Sjogren's serious? it doesnt seem as bad as Lupus although the symptoms are similar. Well I fell asleep in training today, I was so exhausted and you know when youa re that tired and you try and stay awake and you start talking crap and say something and then forget what you were saying? Well I did that, the room was spinning, I felt so dizzy as I was that tired and my eyes rolling and the tutor had to ask if I was OK? It was her fault I fell asleep, she was teaching us about work related computer programs and she had a monotone voice.

But today was a day for super exhaustion and pain, my eyes all puffy, I have gained a few pounds in fluid retention on my legs and my eyes look as though I have suitcases under them - not eyebags, they are really puffy.

Well this time next week I will have seen the doctor, although not sure what he will do - he has a full set of blood results but would have thought he would re do them all and maybe add a few.

You know what, I cant remember a time when I wasnt tired but now it is becoming overwhelming and I have so much I want to do but I tell myself 'one more hours sleep will fix it' and I am sleeping my life away. Although I will say my symptoms are not as bad as they were in the summer, which is good, but we are going into Aussie summer now - a couple more months and it will start to really warm up and I am not sure how that will affect me.

Today my eyes are dry - as usual but my mouth isnt but my lips are really dry. its like one big jigsaw puzzle.Hello Sam,

Sorry to hear how you feeling mate and sometimes when your really tied how you are never mind the handbags under the eyes i thing it can add years on you...well it does me at times.

I do hope the results and what the rheumo says settles your mind because you have gone through alot of symptoms since joining we and they corresponde with Lupus symptoms so much.

I've noticed when i'm tied out you just can seem to move...that's why i do things slowly because when i rest your not having to catch up so much on stuff, half the time my hubby goes mad as i force myself to keep awake unless it does over run me.

Terry xxx

Corella
07-23-2011, 02:44 AM
Well the first part of the jigsaw is now in place, I went to the optician this morning as my eyes have been so bad, she put drops in and then did a variety of tests to measure tear production and has diagnosed me with severe dry eye, luckily no damage has been done to the eye but she has told me to change my sunglasses to polarising category 3, and has prescribed two different kinds of eye drops, she has told me to increase my omega 3 capsules to 3 tablets daily but before I increase, to let the rheumy know on Wednesday as he will need to know about the dry eye and has given me her details to give to him in case he needs any info.

She is certain this is auto immune and I had a lovely rash on my face when I was in there, it wasnt raised but pretty obvious, so she also told me about the importance of suncream which I wear anyway and also explained about what the sun will do to me.

All in all she was brilliant to be honest, she said I will have this dry eye for life but I now have the first lot of drops in. We had a bit of a giggle as I was explaining how forgetful I am now and she said 'yes you are, you have left your glasses in my room' - $300 worth of glasses! So luckily she reminded me.

Part two of the jigsaw is on Wednesday with the rheumy, I dont know how useful he will find the dry eye diagnosis but she told me to tell him.

I have my drops in now and it has bought some relief already.

How is everyone else in my 'family'? Are you all doing OK?

steve.b
07-23-2011, 02:52 AM
steve is "ok"
getting over the tail end of a cold.

glad things are slowely comming together for you.

Corella
07-23-2011, 02:57 AM
steve is "ok"
getting over the tail end of a cold.

glad things are slowely comming together for you.

There is a nasty flu bug going around Perth, lots of people in our office have been wiped out by it. Did you get the fog/smog up your way last night Steve? it was terrible in Freo and where I live, really thick you couldnt drive in it. Not sure if got as far as Pinjarra way but it sure made me cough.

steve.b
07-23-2011, 03:01 AM
luckily it didnt get this far south.
both my son and i are on antibiotics for the flu.
my flu is better, but i am staying on the full double dose of antibiotics to make sure i am over it.

Peridot20_Gem
07-23-2011, 03:59 AM
Hi Sam,

Your optician did sound nice mate and the symptoms sound like sjogrens disease, lets hope on wednesday you get some sound results and the optician is good by giving you her details...so that's one step towards helping you.

I did'nt come on the pc yesterday sam my legs hurt that much and they still had me up at 7am this morning all cramped and in pain.

Love Terry xxx

Linda From Australia
07-23-2011, 07:00 AM
Well the first part of the jigsaw is now in place, I went to the optician this morning as my eyes have been so bad, she put drops in and then did a variety of tests to measure tear production and has diagnosed me with severe dry eye,

Part two of the jigsaw is on Wednesday with the rheumy, I dont know how useful he will find the dry eye diagnosis but she told me to tell him.

Can you ask your Optician to write a note for the Rheumy by Wednesday, I feel he might take it more seriously if it was written by a medical person. Also you said your feet were sore again (I will forgo to mention what you called your feet). What is wrong with your feet? I only ask this because it might be an idea to ask your doctor to get an ultra sound to see if it is bursitis or something similar.

Corella
07-23-2011, 07:48 AM
Can you ask your Optician to write a note for the Rheumy by Wednesday, I feel he might take it more seriously if it was written by a medical person. Also you said your feet were sore again (I will forgo to mention what you called your feet). What is wrong with your feet? I only ask this because it might be an idea to ask your doctor to get an ultra sound to see if it is bursitis or something similar.

I wonder if she would do a letter for me? I might call her and ask.

My feet hurt underneath and at the sides, the heels are fine but along the side of my feet is agony and I hobble, its awful and the only respite I had was when I was on dexamethasone and that helped with my brain fog as well, although it messed me up in other ways it was nice to get relief for a bit that lasted a couple of weeks.

All the optician did was write it on some paper - nothing official about dry eyes and what she recommended, I guess I could call up on Monday andtry.

BonusMom
07-23-2011, 10:32 PM
Dry eyes are a classic symptom of Sjogren's Syndrome, yet another autoimmune disease. There's a good forum that you can google called Sjogren's World-full of great information.

Peridot20_Gem
07-24-2011, 03:14 AM
Hello Sam,

How you feeling today mate and i do hope your feet feel abit better??...but i'd definitely ask for a letter off your optician because they go along way besides letters off specialists.

Terry xxx

Corella
07-24-2011, 05:10 AM
I will phone them tomorrow and see if they can do it, they may not but I have the drops and the instructions on the paper if she says no, lets hope she does it for me.

I went to town today for lunch and now feel exhausted, even after sleep felt tired - its an odd feeling that you just want to lie down. My muscles seem to be disappearing, even at work my legs feel weak like jelly when I walk, and I am getting walking exercise to and from the station yet my muscles are going for some very strange reason.

I cannot believe I have waited this long for an appointment, he is meant to be very nice but after the last appointment with the other guy, I shall have to wait and see.

We had to unblock the shower as my hair blocked up the drain, I still have heaps of hair but you can see fine whispy hairs coming through and stumps of hair where it fell out at one point but it isnt noticeable thank god.

I asked myself tonight what is the worst symptom I have and my answer is whatever is happening at that time and I would say the pain, the exhaustion that sleep cannot cure and the brain fog, oh yes and missing out on the gift that is my life.

But on a good note, I have done quite a bit of homework today and I am so proud of myself because I wrote a really good script for college and it goes to show a little of something is better than nothing.

Oh yes, and my husband treated me to chocolate waffles today in a cafe.


Hello Sam,

How you feeling today mate and i do hope your feet feel abit better??...but i'd definitely ask for a letter off your optician because they go along way besides letters off specialists.

Terry xxx

lovedbyHim
07-24-2011, 05:22 AM
Bless your heart corella. I hope the docs can get your symptoms settled. I hate feeling so poorly and "missing life" as you put it. I'm so glad you have a good man who takes you out.

Peridot20_Gem
07-24-2011, 03:41 PM
I will phone them tomorrow and see if they can do it, they may not but I have the drops and the instructions on the paper if she says no, lets hope she does it for me.

I went to town today for lunch and now feel exhausted, even after sleep felt tired - its an odd feeling that you just want to lie down. My muscles seem to be disappearing, even at work my legs feel weak like jelly when I walk, and I am getting walking exercise to and from the station yet my muscles are going for some very strange reason.

I cannot believe I have waited this long for an appointment, he is meant to be very nice but after the last appointment with the other guy, I shall have to wait and see.

We had to unblock the shower as my hair blocked up the drain, I still have heaps of hair but you can see fine whispy hairs coming through and stumps of hair where it fell out at one point but it isnt noticeable thank god.

I asked myself tonight what is the worst symptom I have and my answer is whatever is happening at that time and I would say the pain, the exhaustion that sleep cannot cure and the brain fog, oh yes and missing out on the gift that is my life.

But on a good note, I have done quite a bit of homework today and I am so proud of myself because I wrote a really good script for college and it goes to show a little of something is better than nothing.

Oh yes, and my husband treated me to chocolate waffles today in a cafe.Hello Sam,

I'm crossing my fingers mate that she'll do it for you but please let we know also on what she says.

Your leg muscles are like they am because they're striving for a good rest...sometimes they say exercise them to strengthen them but being on them to much can make them feel worn out.

I'm hoping the day with the rheumo goes well...i'm still waiting to see when i can see mine, your talking for me 6-8mth at a time.
Dow worry about your hair mate as long as shoots are still coming through, i have to clear our plug hole everytime i go in and the way things are going on here, what with the dog hairs and mine alone we could make up a carpet between we.lol

I told you that Sam just doing something for college helps and i hope the script is good enough when read.

My hubby treated me to a box of Thorntons today...dow worry mate they soon disappeared.

Takecare mate. Love Terry xxxx

Corella
07-26-2011, 01:16 AM
Yesterday my eyes got really bad within 1 hour of arriving in the office to the point my vision was blurred, my manager sent me home so I went straight to the optician who did another dry eye test and said there was a marked deterioration since Saturday and now my eyes were producing zero tears, she stained my eyes again and it were as though someone was pouring acid into them.

I am off sick as both my optician and myself suspect the flouro lighting is making it worse, I saw my GP today who said he didnt think flouro light had any effect on the eyes.

He asked how long my mouth had been dry and then wrote me up for steroid eye drops to use for one week and if it doesnt bring it under control, he is going to refer me. He was also very excited at the dry eye diagnosis and said 'this has happened just at the right time for your rheumy appointment tomorrow, you are very lucky as this is going to help the diagnosis' He told me now he is certain there is an AI disease and to make sure I show the specialist the photos of my legs with the blood spots on them and the rash on my cheeks.

I told him it wasnt fair, I didnt smoke, I never went out and was a light drinker so why me? He laughed, told me to go home and pour myself a large glass of wine.

So I have.

Cheers everyone, we shall celebrate my dry mouth, my dry eyes, my dry lady garden and perhaps tomorrow - a diagnosis. So please add below anything else you think we should be toasting because I have decided that laughter is the best medicine - along with wine of course.

Peridot20_Gem
07-26-2011, 03:34 AM
Morning Sam,

Sorry to hear your eyes was really bad yesterday...i ah being nasty mate but flour lighting does affect our eyes and it seems to me your doctor does'nt seem to know alot about Lupus as a good many don't.

Well i hope the steriod drops help but what a thing to say this as happened at the right time of seeing the rheumo, christ dow they realize sometimes how important our eyes are to we but i do hope tomorrow goes well and now with your eyes they've got to look into you furthur, you've gone through such alot since being with us.

I've got those blood spots again on my face just a few and ontop of my feet so annoying and while there mention about some steriod cream for your flares when they do occur.

Well lets hope tomorrow does come with a diagnosis and enjoy your wine mate because i've been smoking more lately, stressed to hell in pain
ahhhhhhh it does your head in.

Loads of Love Terry xxx

BonusMom
07-26-2011, 06:21 AM
I hope your appt with the rheumy goes well.

Fluorescent lights can wreck havoc on us with AI issues. With your eyes belng so dry, you might want to ask about punctal plugs and Restasis

Corella
07-26-2011, 08:56 AM
At the moment I am on lacrilube for night time, steroid drops 4 times a day for one week only and I am on Systane during the day. What are punctal plugs? Do you have to have them inserted by a doctor? (sounds painful)


I hope your appt with the rheumy goes well.

Fluorescent lights can wreck havoc on us with AI issues. With your eyes belng so dry, you might want to ask about punctal plugs and Restasis

tgal
07-26-2011, 02:32 PM
I hope your appt with the rheumy goes well.

Fluorescent lights can wreck havoc on us with AI issues. With your eyes belng so dry, you might want to ask about punctal plugs and Restasis

Florescent lights are as bad on me as sunshine. I have to wear long sleeves and sunscreen anytime I am going to be inside where there are florescent lights. It took me awhile to figure it out but I had to start wearing long sleeves, hats and sunscreen back when I was working. I still have to do it if I go to grocery stores, ER/hospital/ outside.

I know you don't think about UV rays inside but that can be a big problem and bring on flares quickly

Corella
07-26-2011, 05:47 PM
Florescent lights are as bad on me as sunshine. I have to wear long sleeves and sunscreen anytime I am going to be inside where there are florescent lights. It took me awhile to figure it out but I had to start wearing long sleeves, hats and sunscreen back when I was working. I still have to do it if I go to grocery stores, ER/hospital/ outside.

I know you don't think about UV rays inside but that can be a big problem and bring on flares quickly

I mentioned to him about flouro lights making me ill and he said they have no effect. However at home I am a lot better, within 30 mins of being under flouro lights, I have a rash and my eyes are burning. Surely he must be wrong - I am going to ask the rheumy today.

I am so nervous, my appointment is in 8 hours, not that I expect to learn anything today - he will redo all the bloods I should imagine, cant imagine today will make me any the wiser.

tgal
07-26-2011, 05:51 PM
I mentioned to him about flouro lights making me ill and he said they have no effect. However at home I am a lot better, within 30 mins of being under flouro lights, I have a rash and my eyes are burning. Surely he must be wrong - I am going to ask the rheumy today.

I am so nervous, my appointment is in 8 hours, not that I expect to learn anything today - he will redo all the bloods I should imagine, cant imagine today will make me any the wiser.

Below you will find a link from "Laure's lounge" about photosensitivity..

UV Rays and Lupus (http://forum.wehavelupus.com/showthread.php?4365-PHOTOSENSITIVITY-in-LUPUS)

Below is a link from Lupus.org that speaks about UV lighting, not only from the sun but from florescent lighting as well. You might want to show this to the doctor.

Lupus.org about UV Rays (http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnliving.aspx?articleid=2253&zoneid=527)

Corella
07-26-2011, 06:28 PM
I think the specialist will believe me, apparently he does lots of talks to the Lupus Group of WA and is heavily involved so I should imagine he would know and believe me, I think GPs or many of them, have very limited if any knowledge.

I was reading about the criteria that must be met for a diagnosis and some of it is kidney issues, heart issues, rash on face - I dont know if I have kidney or heart issues and the rash on my face comes and goes, although when I go back over past photos, there are an awful lot with the rash on my face that I never noticed.

tgal
07-26-2011, 06:34 PM
I think the specialist will believe me, apparently he does lots of talks to the Lupus Group of WA and is heavily involved so I should imagine he would know and believe me, I think GPs or many of them, have very limited if any knowledge.

I was reading about the criteria that must be met for a diagnosis and some of it is kidney issues, heart issues, rash on face - I dont know if I have kidney or heart issues and the rash on my face comes and goes, although when I go back over past photos, there are an awful lot with the rash on my face that I never noticed.

Remember though, you only have to have 4 of the 11 criteria to get a Lupus diagnosis. Basically what that means is that when everything else has been ruled out and you have 4 of those 11 then a Lupus diagnosis can be made. You don't have to have all of them but having four doesn't mean you have Lupus unless every other reason for having those 4 symptoms has been ruled out. It would be so much easier if there was a test that said "Positive for Lupus"!

Corella
07-26-2011, 06:45 PM
Remember though, you only have to have 4 of the 11 criteria to get a Lupus diagnosis. Basically what that means is that when everything else has been ruled out and you have 4 of those 11 then a Lupus diagnosis can be made. You don't have to have all of them but having four doesn't mean you have Lupus unless every other reason for having those 4 symptoms has been ruled out. It would be so much easier if there was a test that said "Positive for Lupus"!

That is so true, I wish there was a test for it. I am now going to take some painkillers, I have woken up in a lot of pain and also have to put my steroid drops in my eyes, I dread it as it burns as my eyes are so dry.

Have you got any tips I can use to speak to the consultant? I have a couple of photos to show him, should I make a list of symptoms or is there anything I should ask him. I wish you could come with me.

tgal
07-26-2011, 07:24 PM
First thing you need to do is sit down tonight and make a list of all the questions that you have. Once you get in there and you and the doctor start talking your mind will go blank and you will forget some things that you want to know. The other thing that I would suggest is to write a paragraph or two giving a brief overview of your illness. When it started, the first things that happened, the symptoms you have had since then and give a brief timeline. Do NOT give these papers to the nurse. She will just throw them in the folder and there is no proof that the doctor will even see them. When the doctor comes in hand him/her the paper with the overview of your disease. Handing it to him there almost completely promises that he will read it. He can't toss it away while you are sitting there watching him. Just tell him that you were afraid you would miss something important so you wrote it down for him.

When he is done you can begin to go over the questions you have. Since you have written them down you won't miss something important. I would also take a pen so you can write down answers he gives you. I always do that because if I don't I forget what he said by the time I get home. The pictures are a WONDERFUL idea. I am so glad that you thought to take some.

There is one thing that is more important than anything else. You must remember that HE WORKS FOR YOU. Don't be intimidated by the doctor. Don't let him be dismissive. You are paying him not the other way around! Please keep us posted on how it goes!

Corella
07-27-2011, 04:40 AM
Well I have just got back from the hospital. Doctor is a lovely man and thinks we could be looking at sjogren's but also thinks I am suffering from sleep apnoea. Now lovely though he is, a nagging voice in my head was saying and is still saying I dont have sleep apnoea, he said with lupus you are tired but dont want to sleep in the way that I do and when you wake up, you feel rested, I dont always and I fall asleep at the drop of a hat and he said lupus doesnt have those symptoms. He asked if my husband has noticed me stopping breathing at night, hubby said never, I snore if I lie on my back but I rarely if ever do that.

He wants to refer me for a sleep study to make sure - its a 6 month wait. My GP wants to refer me to an eye specialist to cope with the dry eye but the consultant said there is no need and to continue using the drops. He also said I deffo have fibro as well.

I did say that it is going to be annoying putting in drops every hour and he said it is something I have to do, but to be honest, its not always going to be possible. He wants me to give up driving completely until he does the sleep study, I told him about forgetting where I am and losing words and he said that is sleep apnoea.

He is a nice man though and spent ages with me, so I guess its waiting for the sleep study, he is going to call my GP to get the rest of the bloods, even though the rest were high normal, I am not sure why he needs those. He said he is not going to repeat them as everything was covered in them.

He did at least explain stuff to me but I cant stop driving - not where I live, you cant manage without a car.

So I am still no further on really.

Corella
07-28-2011, 04:55 AM
I made a big decision today, cant believe I did it but I feel so relieved and I hope you dont judge me for it.

Talking to my Dad and my husband, they both remind me that I pretty much have always been sick - various aches/pains, intolerant of the sun, headaches - that kind of thing - Dad said doctors put it down to 'growing pains' whatever they are and hubby reckons it has got worse since moving to Australia.

Anyway, after the GP telling me I need to see an eye specialist, the Rheumy telling me there is no need, just continue with the drops, and told to see the dentist more often, see the rheumy for the sleep study - husband reckons I deffo dont snore, let alone stop breathing, and knowing my luck, get referred to a gynae for being dry 'down below', I had a moment of clarity - in the clinic last night I was thinking about all the study I had to do and how much I had spent on doctors - in the past 18 months, I have had dizziness, urine infection etc, I have spent hours in the doctors surgery and the chest clinic and two different rheumy clinics.

I realised how much I have wasted financially and time wise visiting experts that so far are unable to piece the jigsaw and how much I had wasted trying to find out.

So today the hospital called and left a message on my phone to call them back - my first reaction was 'Oh god, I really dont want to talk to them, more referrals, more money, more loss of time and even more not knowing what is going on, it is like 'pass the parcel' except that they use me instead because my symptoms are so varied they dont make sense.

I realised that I didnt want to do this any more - apparently it can take on average of 5 years just to diagnose sjogrens syndrome can you believe???? This evening I telephoned the hospital back and left a message on the secretary's voice mail - she was the one that called me, thanking her for everything and thanking the Rheumy for seeing me but I did not want to pursue this any further - any of it.

And I feel so much better because whilst I admire anyone with the strength to keep plugging away till they find out what is wrong, I am so tired of it - this specialist was nice but nice doesnt pay the bills, 'Mr Nice' takes nearly 300 bucks when he sees me and I reckon with all the bits that are going wrong with me, I could end up seeing lots of doctors without being any the wiser.

My husband was a bit worried, well very worried but you see I have managed like this for years, I take painkillers, I sleep a lot more and have to avoid the sun, I can live with that and fit in my life around it but I cannot accept the hard work that comes with finding the right doctor. Besides, I do believe only my ANA and CRP were raised, everything else my GP said was normal or high normal and I had a clear chest xray 6 weeks ago.

So that is that, a weight has gone off my shoulders. Actually, talking of weight I am majorly upset - I have walking and been on a diet, my clothes are hanging off me, my wedding rings dont fit yet I have gained 4kgs!!! God knows how, I am so embarrassed, where have they come from I wonder?

tgal
07-28-2011, 09:04 AM
Good Morning,

I can completely understand the way that you feel. I think all of us have been there at one time or another and I am sure there are others that did exactly what you plan to do. I will NEVER judge you because your situation is your own and no one can tell you what you need to do. I just erased a long paragraph about how deadly this disease can be without drugs but you know all of that. When I had to stop working due to the seizures and lost my insurance I was no longer able to afford the specialists. Thankfully I found a GP that knew what he was doing and was willing to help me down this path.

My only suggestion to you is to stop to think about this after a few days of rest. I know that I try not to make major decisions when I am tired/fatigued/ill etc.This is YOUR decision and no one can make it for your or judge you for it. Just know that we will always be here if you need us

n.mac
07-28-2011, 12:23 PM
Good Morning,

I can completely understand the way that you feel. I think all of us have been there at one time or another and I am sure there are others that did exactly what you plan to do. I will NEVER judge you because your situation is your own and no one can tell you what you need to do. I just erased a long paragraph about how deadly this disease can be without drugs but you know all of that. When I had to stop working due to the seizures and lost my insurance I was no longer able to afford the specialists. Thankfully I found a GP that knew what he was doing and was willing to help me down this path.

My only suggestion to you is to stop to think about this after a few days of rest. I know that I try not to make major decisions when I am tired/fatigued/ill etc.This is YOUR decision and no one can make it for your or judge you for it. Just know that we will always be here if you need us

Very Good Advise!

Corella
07-30-2011, 02:43 AM
I spoke to the secretary yesterday, apparently the immunologist I saw has written a long letter to my GP. He really wanted me to do a sleep study at the local private hospital, but hubby has spent two nights observing my sleeping and said I do not snore, bless him! It really annoyed him, although the doctor is probably covering all angles.

I explained to the secretary that I have spent so much money on this and there are yet more referrals, more expenses - where will it end? She then told me to obtain the full blood results from GP as the doctor wants to see ALL of them, I dont know why if they were normal. So I called the GP and asked them to do that.

But I have thought about it and I don't want to pursue this any more, it is too hard, I know something is wrong and I know it isnt a sleep issue - and going down all these paths is not helping me, only costing me financially and emotionally. The only specialist I may see now is an eye specialist because putting drops in every hour is not an option and I suppose I will have to see the dentist a bit more often, I go twice a year - but doctor said to ask for fluoride treatment.

I am not looking forward to summer in the way I normally would but at least I know what precautions to take. One thing though, why is it so hard - why do we have to fight, poke, prod, battle for a diagnosis, it is almost as though you give a doctor a bad name for wanting to know what is wrong and getting a diagnosis.

I feel quite down today, this bullying cow at work who happens to be my boss - she bullies everyone, even the managers - she shouted at me on Thursday and I told her to stop biting my head off. The atmosphere is awful and now I dont want to go back - that sounds lame I know.

What I wouldnt give to win the lotto, tell her to stuff her attitude where the sun doesnt shine and stop being a bullying cow, and then I would drive off to Dwellingup for a weekend to do some photography.

A girl can dream....



Good Morning,

I can completely understand the way that you feel. I think all of us have been there at one time or another and I am sure there are others that did exactly what you plan to do. I will NEVER judge you because your situation is your own and no one can tell you what you need to do. I just erased a long paragraph about how deadly this disease can be without drugs but you know all of that. When I had to stop working due to the seizures and lost my insurance I was no longer able to afford the specialists. Thankfully I found a GP that knew what he was doing and was willing to help me down this path.

My only suggestion to you is to stop to think about this after a few days of rest. I know that I try not to make major decisions when I am tired/fatigued/ill etc.This is YOUR decision and no one can make it for your or judge you for it. Just know that we will always be here if you need us