Guest guest Posted May 19, 2000 Report Share Posted May 19, 2000 Hi hon "GP thinks it is not likely to be MS coz reckons neuro would be getting MRI done quick smart, unless she is totally useless he added!!!!" Well I would say that is a definite option - that the neuro is useless!! Get onto her re: the MRI. Don't be nice about it either - DEMAND a form. You've waited like 2 weeks for just the stupid referral. Then you will have a wait for the test.... grrr..... The man is obviously sick - I mean, people don't usually just pass out on the floor for no reason! And his symptoms sound like MS.... mind you, there are prolly many symptoms he has that sound like every disease under the sun! When do you get the results from your x-rays and Rich's blood tests re: 's Disease?? "Today we got a wheelchair Yippee!! " Glad to hear that you are out and about!! You will have the best arm muscles around! How did Rich go being out? Didn't tire him too much? And soooooo happy to hear about the disability pensions etc for ya! Took us about 1 month from when we lodged the forms to when we got the $$ so here is hoping your branch of Centrelink is quick like ours. (Be warned that they might put you on New Start allowance first until the pension is decided upon - but atleast you get $$ and all you need is a dr's certif. and they back off on the having to look for work thing.) LOL you don't need to reply to my huge vent... I'm heaps better now. Nothing like yelling at the universe *smile* Take care sweetie - keep us informed of how things are! Love A. *=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* Aisha ElderwynICQ 55461955aisha@...http://www.elderwyn.com/aishaMailing list: AishaElderwyn-subscribeegroupsBeing Sick: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 Hiya darling! Gees you get your hubby tucked away in bed and think you can tap a way on your keyboard and people keep knocking on your door!! and we haven't had one visitor, family or friend and we have lived here 6 months. So after the lawnmower man, the people trying to convert me to some church and the parcel delivery of university books for Rich, I am back here. By the way Rich officially starts uni today, is only doing 2 units instead of 4 this semester as that is all that is available externally till next year, but I think that is a good thing, ease into it gently!!!! I know what ya mean about the results, it is that old want something to show up but don't want something else thing!!!!!!!!!!! Hope those anti-biotics get rid of the buggy bug, yucky yuck, sap the bastard! (the bug that is!) You know I have been feeling a bit down of late, in the useless , don't do anything with my life type of thing. Rich says I do coz Ilook after him, but I just think I should be doing more, save the world type thing, just a little something LOL!!! He has got into uni which is great and I am still finishing of my aromatherpy qualification but I just think I should do more, make a difference kinda thing, I don't know what the answer is, as I don't know if you can save the world stuck at home caring for someone!!!!!!!!!! I guess I just think that people thing I am lazy as I don't work etc, and people see Rich on his good days when he puts his "face " on and no one has seen him having the bad fits or falling over etc. I am also still worried about him and nothing as come thru yet appointments wise so I would really appreciate if you could find out a good neuro, cheers babes!!!!!!!! I am worried about him not sleeping too, he is having "hot flushes" he goes bright red, looks sunburn!!! I try not to think about the getting a diagnosis thing much coz it is so frustrating and seem to be getting nowhere, I feel sometimes that I am the only one who thinks something isn't right!! Centrelink.... well they are sending us new forms for disability coz we talked to a woman on the phone and she couldn't understand why we hadn't been accepted so she said re-apply!! Now all I have to do is download mirc and scan some photos before Rich awakens or anyone else comes to convert me..... Take care lots of love Nerys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2000 Report Share Posted July 24, 2000 "Gees you get your hubby tucked away in bed and think you can tap a way on your keyboard and people keep knocking on your door!! and we haven't had one visitor, family or friend and we have lived here 6 months." How inconsiderate... you should put a note on your door - "I'm online, email me" .... *laughs* "By the way Rich officially starts uni today, is only doing 2 units instead of 4 this semester as that is all that is available externally till next year, but I think that is a good thing, ease into it gently!!!!" Is it by correspondence or attendance? "Hope those anti-biotics get rid of the buggy bug, yucky yuck, sap the bastard! (the bug that is!)" Well they are making me feel soooooo nausious and I've only just taken the second pill... *grumbles*.. so its gonna be a miserable day! "I am also still worried about him and nothing as come thru yet appointments wise so I would really appreciate if you could find out a good neuro, cheers babes!!!!!!!!" Of course, I'll ask my neuro on Thursday - REMIND ME!! I am worried about him not sleeping too, he is having "hot flushes" he goes bright red, looks sunburn!!! OMG I get that. Does he get pain in his face, like in his cheeks? Check out this link... http://facial-neuralgia.org/conditions/atfp.html It could also be related to the Hashi's... and thyroid/hormones. Is he working with an endocrinologist? He sould be getting checked. Has anyone bothered to check hormones, even oestrogen/progesterone etc? "Centrelink.... well they are sending us new forms for disability coz we talked to a woman on the phone and she couldn't understand why we hadn't been accepted so she said re-apply!!" Good... I thought it was stupid that you had not also. "Now all I have to do is download mirc and scan some photos before Rich awakens or anyone else comes to convert me....." LMAO... photos?? *grin*... gonna post em on the list?? Love ya chockie gurl! xox isha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2000 Report Share Posted August 15, 2000 Hiya sexy bum Ya know I thought me and G were the only ones who can comment on your bum and I turn on my computer and discover that your botty as become an international discussion, you were even on the news "Save Aisha's bum", world unites peace reigns thanks to Aisha"s bum!! Man you miss a couple of days and find out you are about the saniest one left on this list!! Just Kidding ya all there, me sane BAH!!! You guys are in serious trouble if I am the sanest one!! Do ya know I haven't been able to get near the e-mail for the last week coz hubby has takin it over, not even the e-mail just the puter. He has having a shit house time and the only thing that helps is playing Age of empires, but this involves the computer!! Grumble, grumble.... No I don't mind coz I can do other things but I relly miss ya all!! Sob,sob.... But I have it for the rest of the evening coz he is conked out on the sofa, been up 48 hours again, becoming the norm. He has been totally off the anti-dep for a week now but I think what we thought were side effects of coming off them is actually not. Maybe the symptoms have been suppressed so far due to the tablets. I am one very frustrated bunny at the mo, with everything but the list is in a happy mood so will keep it that way!! So Aisha babes when did you become a sex symbol heh??? And talking of that how is your main ASSet???? Have you been to doc? Are you still bleeding?? I will have a little ready read of my messages and see what else you have been up to young lady, you can't hide from me!!!!!!!!!!!! Love ya Nerys Nerys Hi babes, You're too quiet.... what's going on?? *chocky hugs* Love Mother Hen *=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* Aisha ElderwynICQ 55461955aisha@...http://www.elderwyn.com/aishaMailing list: aishaelderwyn Being Sick: The Being Sick CommunitySharing our resources:-Add a website URL you think may help another, or even add a link to your own webpage. Chat:- Scheduled Daily Chats at # on IRC DALnet.http://www.elderwyn.com/members/chat.htmlEgroups JAVA based chatroom for your use anytime:-chat/ (Anyone on web-tv will not be able to access java and it is very slow compared to IRC.)Memorial Page:-http://www.elderwyn.com/members/inlovingmemory.htmlMembers Lounge:-Medical resources, counselling via email, information on the daily chat times, free psychic readings and the cartoon of the day. http://www.elderwyn.com/members Members Profiles, pictures, and birthdays:-Message Archives and Digest Attachment Pictures:-messages/Promoting This Community:- Would you like people to be able to join from your webpage?promote/Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit mygroupsTo subscribe or unsubscribesubscribe/ ~~~~~~~~~~~~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo Prayer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2000 Report Share Posted August 15, 2000 "Man you miss a couple of days and find out you are about the saniest one left on this list!!" LMAO .... sure sure ... that will never happen. You want to be a "normal?" ... and darling I would never threaten you with the sane word .. its got four letters.. its a bad bad word LOL "No I don't mind coz I can do other things but I relly miss ya all!! Sob,sob...." And we miss you mad woman LOL "He has been totally off the anti-dep for a week now but I think what we thought were side effects of coming off them is actually not. Maybe the symptoms have been suppressed so far due to the tablets." That is not as strange as it sounds. When I was weaned off epilim cause it was killing me all my seizure type things came back. And usually worse. I'll give you the name of that guy again that my neurologist recommended. The fact that he is up 48 hours etc is sus? Has he had a sleep study done? This might be really useful. You dont need to be fatigued etc to need a sleep study, they are used to diagnose lots of strange conditions. In Rich's case I'd say that a sleep study and a Lumbar Puncture (spinal tap) are essential. You see hon, the spinal fluid is different from blood. So stuff shows up in the spinal fluid that might not show up in blood. He can even be tested for MS via the spinal fluid, as MS does not always show up on an MRI. The fact that he has white matter on his left frontal lobe means he has neurological involvement from something. So please hon, get him to a good neurologist. He needs help and with neurological conditions, the longer you wait, the less chance you have of it ever returning to normal. "I am one very frustrated bunny at the mo, with everything but the list is in a happy mood so will keep it that way!!" No hon, if you are frustrated you must share with us what is going on in your world. Its not as if you get any support anywhere else. We will always be insane on this list - humour is vital, but first and foremost we are a support group so please - if times are tough for you spit it out at us. We are strong, we can handle the truth!! LOL ... "So Aisha babes when did you become a sex symbol heh???" Um ... would you like to see my latest driving license picture? I think that will kill off that arguement! Please look after yourself Aunty Nerys and vent all you need. I will find those names again for you! You need to organise the appointments yourself as you may have noticed, most Dr's are too busy to remember everything thing, and these days you are the one responsible for your own health care anyhow! Love Aisha. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2000 Report Share Posted August 18, 2000 howdy Aisha!! So Butt girl are you the female modern version of Bat girl???? So hows things in super sexy sydney?? I was mega pissed off before as we had been to the doc and he hasn't made a neuro appt coz he spoke to shoulder pads and has decided he needs to see Psychiatrist first, umm YEAH RIGHT!! So 1st sept Psychiatrist time!!! Well we had an argument with him and he didn't even know the MRI had shown white matter, shoulder pads hadn't mentioned it in her 5 page report she sent him, one page for every minute she spent with us!!! So he said if we give him a copy of the MRI and name of neuro you recommended he would do the referral. So comes home, pissed but pleased going to be resolved and then hubby decides to agree with doc and wants to wait till after psych thing to do anything. Well this was the stage when I last wrote and I was very frustrated to put it lightly, I felt like I was the only one who gave a shit and that even R had given up, its his life so it has to be his choice but it was hard, However the good news is that he has now changed his mind, and have given the info to doc so should get to see neuro soon (when is another question) but at least something is being done!!! I wore him down eventually, he he !! Nah he just had a rotten week and had trouble thinking of how to make it to the end of the day, so I shall cut him some slack, seeing as I got my way!!!! He has decided to stop taking his beta blockers, hasn't told the doc. Don't know that this is a wise move, so I am in worry mode, but so far he seems ok. His dizziness seems better, but I will be keeping a close eye on him, he is a stubborn bugger at times, love him heaps though!!! No he hasn't had a sleep study done or spinal tap or EEG etc. Hope fully new neuro will be more interested!! Weeeell I am going to play "catch up on e-mails game" and see what has been going on?!?! Take care of yourself, Hows that botty doing??? Are you still glad you shared??? Lots of love Nerys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2000 Report Share Posted August 18, 2000 *hugs* Hello Aunty Nerys "So Butt girl are you the female modern version of Bat girl????" LOL .... And I'd look so good in the outfit! lmao! "So hows things in super sexy sydney??" Oh oh getting tackier by the minute with the great Olympic build up. We are having giant olympic rings placed on the entire side of the harbour bridge ... charming dont you think? Goes well with the steel sculptures of athletes that light up neon at night ontop of centrepoint tower. I was dissappointed though that they have scrapped the idea of people dressed as kangaroos riding bicycles for the opening ceremony. Would have gone well with the tacky Olympics. Perhaps I could bribe someone to bring that idea back? However I think Willamson opening it with Waltzing Matilda accapella will be enough to make the tourists wonder why the hell they spent the money to get here, and will KILL the tourist industry to Sydney! LOL .... have you noticed I'm not impressed? Its going to be sooooooo bad. "So he said if we give him a copy of the MRI and name of neuro you recommended he would do the referral." Are you seeing that Neuro? "He has decided to stop taking his beta blockers, hasn't told the doc." He did not just stop suddenly did he? *slaps Rich* ... never suddenly stop taking meds that affect nerves and blood pressure. Bad Bad Rich ... always taper off meds. *growls* "No he hasn't had a sleep study done or spinal tap or EEG etc. Hope fully new neuro will be more interested!!" Well hon as you have found out you are the one who is going to have to tell the Dr what to do. (Some of course are competant!) However be prepared. Write a list. Tell your new neuro that you think its a good idea to have a Lumbar Puncture (spinal tap) ~ an EEG ~ and a sleep study ~ and MRI zoom on the white matter. (Thats what my Dr suggested for Rich when I told him about symptoms and MRI findings). Dont leave until they are all booked LOL. Just keep your butt anchored in the chair until you get the answers you need. "Hows that botty doing??? Are you still glad you shared???" Hahahahaha ... absolutely! And my butt is very happy with bran flakes. No blood. The myoclonus doesnt like the bran, but I dont care about that! LOL ... I have pills for that! So its working good - no need for a doctor to look "downtown" as my lovely immunologist so eloquently wrote. THANK GOD! I was not looking forward to that! But its tests again this week... fun and joy. Every 4 weeks now not every 6. Blah. But hey, I remember being a hellofa lot worse so its a minor grumble. How are you coping Nerys?? Has Rick hijacked your puter again? Eating lots of chocky?? LOL Take care babes! And let us know how it goes. Hope that new neuro helps. Love Mother Hen aka Butt Girl LOL btw Nerys - who are you? Chocky Chick? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 Hiya AISHA!!!!!!!!!! I dunno ya make one mistake and spell a girls name wrong!!!!!!!!!! Actually I just did it again spelt it Aisda, but noticed this time!!!!!!!!! lmao ... well Nerys - how is your botty??? Well seeing as you asked it is ok actually. I mowed the lawn today, nothing to do with botty's but neat change of subject heh!!!!!!!! Grass really gets up my nose, glass clippings make my nose run and eyes water and itch all over!! Actually gRass does this not gLass, oh i am having a whoppsy finger day!!!!!!!!!!!!!!! My friend takes the train to work in the city. Sent the neuro a fax so hopefully should hear back soon. I still havent recovered from you saying that you dont want chocolate sent to you in the send a thingie thing. Are you sure everything is ok?? LOL Well you know i debated about it for a very long time, ask Rich. And I am a chockie but don't like many types, mainly go for that plain bar of cadbury though am partial to belgian seashells but .... I love things to keep so am in such a dilemma and now you are making me dither again. I know just match me up with someone who has just won lotto so i can have both hehe!!!!!!!!!!! I am going now before you give my brain any more stress............... take care lots of love nerys Quote Link to comment Share on other sites More sharing options...
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