Goodbye and Thank you

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Goodbye and Thank you

Postby 71jules » Thu Jul 02, 2009 11:33 pm

Hi everyone just a last post to say thank you and good bye. I went to get a second opinion today and was told prior to the little tests they do that nobody denies the symptoms or that I could have MS to after the little tests I want you to leave here, GET A JOB AND GET A LIFE! Yes that's what I was told. I cried and cried and cried and then went home and cancelled my appointment with the hospital to get the results from an EEG. I can't take this anymore, with all my symptoms and the stress on me and my family to be spoken to and treated like that is to say the least disgusting and hurtful and not called for.
I will suffer now with the symptoms and one day I only hope to find out what it is that is causing it. MS or not! I would like to thank you all from the bottom of my heart for your ongoing support, friendship and understanding. I would like to remain in contact with catfreak and needled in particular and anyone else that would like to I would love to.
I wish you all the very best of health and hope and send my hugs out to all of you.
You will be forever in my thoughts and when I hear about an oral treatment I will raise a glass for you all.
Take care now and forever.
Hugs
Jules
Hugs to every single one of you I have and will meet on this site. Whether I end up with a diagnosis or not it will have been a pleasure knowing you all via this site. Take care now and forever. :) <3
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Postby queenie » Fri Jul 03, 2009 2:02 am

You sound exactly like where I was, 20 years ago, where after suffering from many wierd and troubling symptoms, a doc told me to get a hobby!
Yes, I kid you not! 20 years later, when half of my body went numb, and I requested an mri of my brain, low and behold; a whole head of lesions, too many to count!
Any way, 20 years ago, they couldn't have offerred me much in the way of tx, or of hope. I guess everything happens for a reason!
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Postby LR1234 » Fri Jul 03, 2009 3:13 am

I have had MS for 14 years and had been told by 5 neuros I definately did not have MS. After a big relapse they had to take that back. I had 10 MRI's on brain (9 normal) 2 spine MRI's and 3 LP's (2 were normal). Don't let these idiot drs get to you! They can only go by what their tests say but some of them won't accept their tests are just not efficiant enough.
Last edited by LR1234 on Fri Jul 03, 2009 6:47 am, edited 1 time in total.
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Postby 71jules » Fri Jul 03, 2009 5:37 am

:) Thank you so much for those replies LR1234 and queenie.
LR1234, unbelievable what you have told me and I will try not to let this shake me up and upset me as much as it has. I know this is not in my head, honestly so does my family and friends who have witnessed my symptoms first hand with me and have been on the ride of stress.
Fancy paying someone $230 AUD to have someone be so rude to you and have you in tears and feeling so helpless and upset.
She even made an asumption about the other Neuro, making me believe I was being humoured.
She insinutated I googled symptoms, for goodness sake I can't talk properly, walk properly amongst many other things. I didn't go looking for MS symptoms, the symptoms found me if you know what I mean.
I said to her whether it's MS or not I just wanted to try and find out what is wrong with me.
She tells me to get a job and get a life, how dare she?
Thanks for listening again.
Your support is amazing as usual.
Hugs
Jules
Hugs to every single one of you I have and will meet on this site. Whether I end up with a diagnosis or not it will have been a pleasure knowing you all via this site. Take care now and forever. :) <3
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Postby Needled » Fri Jul 03, 2009 5:52 am

Jules, DON'T LEAVE! DON'T GIVE UP!
I was so upset with the way my neuro treated me at my last appointment that I am looking for a new one. You have to find someone who will listen to you. It's not right, it's not fair and it just plain old sux that you have to go thru all this extra stress of finding the right doctor when so many other things aren't going well for you at the moment. Listen to LR and queenie and take their stories into account. If you know something's not right with you, you have to fight for yourself until you find the doctor who will help you. Most of us here have been through this in one form or another. Jules, please think about it before you let it go. Or maybe if you just need a break to regroup, that'd be OK, too. But please don't give up.
Hugs right back atcha, Jules!!
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Postby catfreak » Fri Jul 03, 2009 7:58 am

Jules, my dear friend from AU,

DO NOT, I MEAN IT, DO NOT STOP NOW!!!!!

Find another Dr or find 10 new Dr's if that's what it takes to find out what is wrong with you and what is causing all these horrible symptoms. There is a compassionate and educated Dr out there somewhere who will stick with you until they figure it out. Whether it is MS or some other disease you deserve respect and compassion.

I was fortunate to find an MS Specialist and he has been there for the last 6 1/2 years of my diagnosis, 5 of those being in limbo and labeled Probable MS. He was so sad the day he had to tell me I had more lesions, after 5 years of no real changes in my MRI, and we were looking at treatment plans if the next MRI showed more spots. It did and I got the "official DX". This man worked me through all the symptoms and changes and loss of function and never made me feel as if I was making any of it up or googleing symptoms. He also tells me one of his goals is to keep me functioning and working as long as possible. He will also tell when he thinks I am working too much or too hard and that it's time to back off the long hours and stress. Right now I am working 50 hrs a week and I did not dare tell him last week when I went for my appt , I made the mistake of telling the infusion nurse and she really got on to me. But he is right, i have a massive headache and I know it is from working too many hours.

Please Jules Please don't go away! :( :( :(

You need us to help you get through this and we need you too. Sweetie, you are me just a few years ago!! And this site and these wonderful people have helped me through many, many bad times. And the thing is most of them don't even know they were helping me, that's the beauty of this place, we help each other and we know we are not alone in this struggle. It doesn't matter right now if you are diagnosed or not because you have become a part of this family and we need your support too.

We will always keep in touch Jules! You are my friend.

HUGS, HUGS and more HUGS!! :) :) :) :) :) :) :)

Cat

PS: Read the quote under my name and don't forget it!
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby peekaboo » Fri Jul 03, 2009 10:00 am

Please don't go..we luv ya here. If you give up, then they win and you suffer. Let me atem I'll knock some sense into them :twisted:
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Postby 71jules » Sat Jul 04, 2009 1:36 am

:) :( :? Hi again

Wow, thank you so much for your posts and they brought a smile and tears to my eyes. I am overwhelmed honestly and I hear what you are all saying. I know my family believes in me and supports me and loves me so much and I also know you beautiful people, although you have not met me, care and believe in me also.

I will be ringing the Neuro on Monday and I will see if she will speak to me so I can tell her she had no right to treat me with such disrespect and did not have any right to insult me with such comments. $230 AUD, I mean if only I had of known but we don't have crystal balls, lol, I know.
I am still so so upset and hurt but I know she is one person, she means nothing to me and in time I will be able to put her comments behind me.

Time to take a little break from this all but as you would know the symptoms will be there with me, they don't go away just because you need a break.
As I said to the NEURO, :twisted: :evil: whether it is MS or not I am just trying to find out what is causing all these symptoms.

Thanking you so so so much, I will get on the phone on Monday and reschedule an appointment with the hospital. I know it won't be for a few months so that will give me time to just sit back and stop for a breather.
I have really listened to my husband who is a very very supportive loving hubbie, he knows the right Dr will be there somewhere.
I read you posts and they reached right to my heart and so thank you, I will not give up but fight harder and harder to seek an answer as to what is wrong.

You know me I can't say thank you enough and hugs and hugs and kisses out to all of you.

Friends forever in my heart.

Jules
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo :wink:
Hugs to every single one of you I have and will meet on this site. Whether I end up with a diagnosis or not it will have been a pleasure knowing you all via this site. Take care now and forever. :) <3
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Postby Needled » Sat Jul 04, 2009 5:41 pm

Atta girl, that’s the spirit!!!!!

I will get on the phone on Monday and reschedule an appointment with the hospital.

I will not give up but fight harder and harder to seek an answer as to what is wrong.

C’mon Jules, if you weren't here, who would listen to the horrific story of my two stitches last month?? :lol: :lol: You are now under strict orders to check back in with us when you feel the need. We’ll be here.
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Postby 71jules » Sun Jul 05, 2009 12:14 am

:wink:

Thank you so much again and Needled I fully understand your phobia with needles as you know I am a needle phobic one of the worst a doctor has met.
Last week was one of the toughest of my life, Over four times I had to have my ear drained by a machine with a thing right into my ear drum.
I had a and still have a severe ear infection and it's been there for over 10 days. We had to go every second night at 9pm to have me lie there on my side for up to 45 mins and get that painful thing done, only once with gas then they ran out. They continuely had to stop due to the pain.
On top of that in the same week I had my EEG which I was stressing over and didn't cope too well with at the end of the day, emotionally upset.
I also had an appointment with an Opthalmologist because of my eyes.
Then yes on the Friday it was topped off with that :roll: :evil: :x grrrr
Neuro treating me the way she did.
Do you know she seemed to judge me because I am a stay at home mum, she seemed to think I have nothing better to do than sit and google a disease and then latch, her words, onto it and then become phycosematic........grrrrrrrrrrrrr. Oh my gosh if only I could report her but then it's her word against mine and I'm only the patient, she's the educated Neuro way above me, LOL, NOT!!!!!!
We also had very offensive emails sent to us with swearing in them and telling me to get a life from the kitchen company that put an island bench in. It has a major scratch across it and we asked them to please come out and do a warranty check on the work. We copped foul language in the email etc all over that. :? 8O .

Well I will be in contact probably tomorrow again to let you know if I have rescheduled an appointment.

Take care and please feel my arms around you all as I send you a great big hug.

Jules
xo
I will continue :roll: who knows where from here.
Thank you and
Hugs to every single one of you I have and will meet on this site. Whether I end up with a diagnosis or not it will have been a pleasure knowing you all via this site. Take care now and forever. :) <3
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Postby 71jules » Sun Jul 05, 2009 1:35 am

:wink: Peekaboo I knew there were some names I missed when I said who I would love to remain in contact with.
Soz so much how could I have forgotten that cute name PEEKABOO, :lol: .
I would have missed you all so so so so much.
Please be sure to read the post I put above this one.
On the phone first thing in the morning to the hospital and that :evil: Neuro.
Pity there's no refund for a faulty product that failed, LOL :lol: :lol: .
Keep strong, take care be in touch again soon.

Hugs
Jules
Hugs to every single one of you I have and will meet on this site. Whether I end up with a diagnosis or not it will have been a pleasure knowing you all via this site. Take care now and forever. :) <3
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Postby queenie » Sun Jul 05, 2009 7:53 am

My doc is an ms specialist also, and doesn't pretend to have all the answers. He listens to me, and lets me make all the choices.
You need a new doc! Try to find an ms center near you. I am new here, and don't know what AU means - Australian Union? Austria? Where are you located?
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Postby 71jules » Sun Jul 05, 2009 4:07 pm

Hi queenie, AU is Australia and AUD is Australian Dollars.

I tried phoning the Neuro this morning but apparently she is not there today. When I rang I told them I needed to speak to her because I had something important and urgent that I forgot to say to her on Friday :lol: . I have left a message so we will see if when she sees my name whether or not she rings back.

I will give the Neuro at the Hospital one more try and see if I feel more confident in her and that is through the public system.
The Neuro I saw on Friday was done privately hence the cost I had.

Thanking you.

Jules
Hugs to every single one of you I have and will meet on this site. Whether I end up with a diagnosis or not it will have been a pleasure knowing you all via this site. Take care now and forever. :) <3
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Postby catfreak » Sun Jul 05, 2009 4:38 pm

Jules,

I'm glad to hear you are going to give it another try.

I'll never understand why these Doc's just assume you are a psycho hypochondriac. You would think of all docs the Neuro would understand. You need to tell her that you do have a full time job - your family!! They have no right to judge your choice to be a stay at home Mom!! :evil: :evil: :evil: :evil:

Makes me just want to slap somebody!!!! :evil: :evil: :evil:

Hugs!! :D :D

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby 71jules » Sun Jul 05, 2009 8:47 pm

: :lol: Hi catfreak, thanks for that giggle yep she had no right at all to say what she did. Don't worry I hope to give her what for tomorrow on the phone :x .
Good news, I rang the hospital and the appointment I cancelled on Friday was still there for this Wednesday to go and get the results of the EEG and see the original Neuro again.
Fingers crossed everything goes well with this.
I rang the MS Society today and spoke to a coucillor who has suggested the next time my symptoms are bad and in particular the walking and raggy doll body, to call an ambulance and get straight to the hospital so they see first hand.
I will take that advice.
Thank you again so much...

Jules
xo
Hugs to every single one of you I have and will meet on this site. Whether I end up with a diagnosis or not it will have been a pleasure knowing you all via this site. Take care now and forever. :) <3
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