Goodbye and Thank you

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby 71jules » Mon Jul 06, 2009 9:03 pm

:lol: :D :) :lol: Hi, yippee I did it, she rang me and I let her know that I had paid her $230 AUD to have her insult me and insinuate I had made my symptoms up, ridiculous I said. I also told her I didn't appreciate her insinuating that my current Neuro was humoring me and handed me tablets just to send me on my way. I told her I felt sick when they told me I had to pay the money after being insulted. I told her I was in shock about what she said and that's why I didn't say it on Friday.
She said nothing apart from thank you, thank you very much and then I hung up. I recorded it on my mobile phone. Oh I feel so good and relieved and I have said that to her not only for me but for the hope she doesn't speak to anyone else like that.
Oh, relief just a pity she didn't offer me my money back, lol...... :o

Hip, hip hooray.................................

I will let you all know how I go tomorrow.

Take care.

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 » Mon Jul 06, 2009 9:13 pm

WOOHOO!! 8O 8O 8O 8O

You go and get em girl! Tell them just what is on your mind. She probably walked around for a while with her mouth hangin wide open!!!

Now just take each and every day one at a time. You can't change the past so look for the future.

Gotta go HUGS!

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 Needled » Tue Jul 07, 2009 5:49 am

Way to go, Jules :!: :!: :!:
Now keep at it and keep us in the loop. Don't you dare leave us hanging, especially now that you've found a "new you." I want to see more of this girl and how she handles things. :D
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Postby queenie » Tue Jul 07, 2009 6:33 pm

You hang in there Jules!
It took me approx 14 years of "hanging" to finally get taken seriously.
I think the suggestion to call an ambulance next time you have a bad "spell" is a good one.
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Postby 71jules » Wed Jul 08, 2009 8:31 pm

:? :( Hi again

Well I went back to the original Neuro and the EEG came back clear.
Going on all my symptoms she believes I have Ataxia going on with my brain a form of a disease to do with it but you can't get a def diagnose. I don't think they can unless they biopsy your brain when u die.
She told me if heat exaserbates soz about the spelling, it stay cool.
A bit hard when one it's not clear what brings it all on and two yes heat does make it worse and we live in a very warm part of Australia with high humidity. I can just be unable to walk at any time, unable to take my own weight. Speech at any time can be affected or I can sound slow because the brain won't work quick enough. I am sure you all read my first posts with the list of symptoms.
Now with the MRI showing something going on in the white and grey matter I think doing another MRI in a year or so wouldn't be asking too much do you?
I am to go back in 6 months but at this stage whether it is this or it turns out to be diagnosed with MS, I can see that we will have to put a chair in the shower to help me and have my hubbie talk for me when we are in public and the speech is just too embarrasing for me. The symptoms are interferring with my life and to be told no medication or cure or treatment has deeply upset me and sent me into a spin feeling so numb and confused and scared of the future.
Please let me know your thoughts.
Soz for all the mistakes in this, head in the clouds.
Hugs and more hugs.
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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Postby catfreak » Wed Jul 08, 2009 9:44 pm

I think an Mri every 6 months is reasonable to get a better idea of changes, Have they one a lumbar puncture yet.. :( :(

I went five years with no treatment until official diaznosis. Just treated the symptoms. Let her treat you and see how it all works out.

living with the day to day problems of spasms, twitching, tingling, headaches and speech problems are something we all do with a little help from our families and some meds.

Hang in and keep us posted.

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 » Wed Jul 08, 2009 10:12 pm

Hi Cat

Are you working too hard still? You seem to be on not long after I post and considering the time difference I have to wonder if you're staying up very late.

No they haven't done a lumbar puncture thank goodness, 8O :cry: just to mention a couple of emotions that would go with that.
I do honestly feel six months for another MRI wouldn't be too much to ask for but I feel if I mention it then she will think I am focusing too much on the MS diagnosis still.
Deep in my heart I still wouldn't be surprised if there is a diagnosis of MS in time to come but it's up to the Neuro to do the right tests I suppose.
Being in limbo and having no 100% diagnosis is tough.
Well I will plod along and try and take it a day at a time with the latest news I have to deal with.
No cure, no treatment no def diagnosis, WHAT? :? 8O :cry:

Well soz the news wasn't a bit better than this I can tell you that.

Thank you again and take care everyone and Cat slow down and rest with a cuppa every now and then girlfriend....... :wink:

Needled I look forward to hearing what you think.

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 » Thu Jul 09, 2009 3:36 pm

Hiya Jules, Before I say anything, I have to clarify my earlier post. When I said I wanted to see more of the "new you," I should have also added that there was NOTHING wrong with the "old you." :D :D Please don't ever think there was.
OK, back to the current question -- I hate to wimp out and not have anything original to say, but Cat said it best. One thing I've learned to trust is my gut. Go with what it's telling you. If you want an MRI in six months, which I also happen to think is reasonable, then get one. If your neuro believes you have ataxia, read everything you can on it. Find out what it is, what it's about, the same way you've done with MS.
You know how I feel about the lumbar puncture: nauseas. But if I had to have one to help with a diagnosis, I'd do it. I've talked to people who've had them and read what folks here at TIMS have said, and they've all lived to tell the tale. I'm sure it's not nearly as horrible as we imagine it is.
None of this is any fun (except for the people you meet and get to talk to here), and I'm so sorry you're in this spot. Just take it day by day and try to have a general plan mapped out. We all need some help from family, friends, doctors and meds. So keep your chin up and do the best you can. And don't forget, we're always here. Maybe an ocean or two away, but we're here.
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Postby catfreak » Thu Jul 09, 2009 8:43 pm

Hi Jules,

You would be proud of me i stopped working at about 6:15 and went to a birthday party for a dear friend with my husband. It was a surprise party and she had no idea. It was Judy and her husband, two of their grown children and thier spouses and 6 grandkids all under 9 yrs old.....AAAHHHH!!!!

It was a great break from staring at 2 monitors and files all day long. I think I worked 14 hours yesterday :cry: :cry: :cry: and 13 hours Monday :? :? :? . The money is just too good and I am trying to save maybe for some CCSVI surgery....... or a tummy tuck!! :lol: :lol: :lol: :lol:

OH and my migraine is much better today, thank God, I was in a stupor yesterday, all day and my hubs threatened to take me to he dr but i said no, Nothing they can do anyway.

Jules, someday I am gonna come to Queensland and have a cuppa with my Aussie friend, maybe Needles would like to join us in that cuppa!!

Hugs to you my friend!

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 » Thu Jul 09, 2009 11:02 pm

:wink: Catfreak and Needled that cuppa in Queensland, Australia sounds great and I have some lovely tea cups and saucers waiting here for you one day.
Anybody in America who doesn't know what cuppa means, it is Aussie slang for cup of tea, lol,. :lol:

I am really finding this news I received hard to deal with, vey down and feeling quite lost.
The love I have, my hubbie and two children and a brother interstate and the support and care I am feeling from you all is a huge help to me and helps lift me.
The Ataxia term my Neuro told me about but the type of disease name she can't give 100% unless as I said if they took a biopsy of my brain, ahhhhh which they won't do of course.
I can't get help, no medicine, no help of any sort and from what I have read about this Ataxia it is very similar to MS and no wonder I still wouldn't be surprised if it turned out to be this.
I feel like I am in a dark tunnel walking trying to get to see the light at the end of it but it remains dark and I am not seeing the light of it, it just keeps on going and I don't see an end anytime soon. Sorry to sound so glum but this is the honest truth I want to be honest with you all as you are my friends from afar and honesty is one of my traits.
One day at a time is exactly how we need to take this, baby steps.
Coucilling is an option but I would only want to talk to someone who specialises in the area of people going through things like this.

Thanks again and kisses and cuddles to 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 71jules » Fri Jul 10, 2009 1:50 am

:wink: :) Catfreak, well done for taking my advice and slowing down.
Every time you stop for a cuppa, :lol: have a little think about me and I will do the same when I have a cuppa, I will think about you and Needled.
I am sure it will raise a smile.

:wink: About to have one in about 5 mins so here goes my first try at this.
In my thoughts.

Hugs
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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Postby 71jules » Fri Jul 10, 2009 4:49 am

LR1234 and queenie, I would love to hear from you again and see what you think of the latest news.
I really appreciated your input and hope to hear from you both again and anyone else for that matter.
Anyone who is in contact with me who may ever come to Queensland, Australia I would love to meet up with for a cuppa.
Hope you're all having a great weekend ahead of you and know you're never far from my thoughts.
I have been doing research on Ataxia and I can see there are many symptoms similar or the same as MS and I said in an earlier post I still wouldn't be surprised if it turns out to be definate MS diagnosis down the line somewhere.
If you don't mind at all I will hang in on this site for a while longer as you are all helping me more than you could know.
Well 9.58pm on Friday night, bit tired so will go.
Jules
: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 glyn » Wed Sep 16, 2009 11:42 am

HI Jules

My bride to be has RRMS

and My sis has Fibromyalgia and Epilepsy (it took forever for her dx to come through.

Dad has Nerve issues due to taking Dilantin for decades (Epilepsy also) as well as 2 bypass surgeries.

I am not a doc, lawyer or salesperson for some holistic healing thingy.

All I'm doing is research on my own to try and help my girl.


I don't know your history like the others here.

Sounds like you don't like the needle route.

I helped my sis start on Vitamin D and it's made a HUGE difference in her. She was sleeping 23 hr/day for the past 4 years. Now she's at 12 hours. And, her attitude is completely changed. From Black to bubbly again. After four years she's my sister again.

MY TAKE ON "Doctors"
As a teen I had the WORST acne possible. The Dermo had me on Tetracycline, and monthly Cortisone shots. Along with "Active Acne Surgery.) Basically, Cutting my face with an Exacto knife. This went on from about my 13th birthday until I was around 20. How did I cure myself? Washing my face with LAVA soap in ice cold water. In one week my Acne was completely gone. After 7 years of so called medical treatment. They dont make cash by handing you a bar of soap do they?

Have you tried a Nutritionist instead of a Neurologist? A Pharmacologist instead of a Pharmacist?

This is a good start page for supplements (if you haven't gone here yet.)

http://www.msrc.co.uk/index.cfm/fuseact ... pageid/772

The only thingI don't see here that's supposed to be good is Tumeric.

I've been looking into the Diet solution and connections of Leaky Gut to MS as well.

If you've already tried all this, my appologies.

GOOD LUCK and hang in there.

Glyn
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Postby 71jules » Wed Sep 16, 2009 8:56 pm

Thank you for that, appreciate your words.
If you look under my post PLEASE HELP,I AM SO SCARED you will get an insight into my symptoms.
I was interested in the mention of LAVA soap too for our son so thank you for that too.
I will keep in touch, thanks again.
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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Re: Goodbye and Thank you

Postby NHE » Thu Sep 17, 2009 3:31 am

I used to have a problem with acne until I started using a bar soap from Neutrogena specifically for acne prone skin. It doesn't dry out my face either. I've used it for years. The soap doesn't have any added hardeners so you have to keep it in a dry soap dish when you're not using it or it will quickly melt away.

NHE
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