PLEASE HELP I IAM SO SCARED

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Postby JenniferF » Wed Sep 30, 2009 5:13 am

71jules wrote:Thank you for that, I think I will mention it as I don't know what the brain was doing to not understand what I wanted to do.
My brain is playing up more and the symptoms have increased with the warmer weather we are now getting here in Oz.


Ditto the advice to mention it to the neuro. Meanwhile, maybe develop some plans for how to not panic when something like this happens? Since panicking/nervousness is notorious for making everybody's brains not work.

Jen <-- an accountant, aced college-level calculus, scored high enough on SATs & GRE's to get into reputable engineering schools, has *never* been able to simple arithmetic with an audience.
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Postby Needled » Wed Sep 30, 2009 6:21 am

G'day Jewels! Ditto all the advice on the telling your neuro. Do you have an appointment yet? If not , GET ONE. Keep going til you do. And make sure you let us know what happens.
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Postby 71jules » Thu Oct 01, 2009 11:05 pm

Hi and thank you, I heard from the hospital today and they won't move the appointment forward. They suggested talking to the GP about whether he can refer to occupational therapy or speech therapy to help me deal with the symptoms when it happens. I thought it had to be someone specialised in neurological physio and so on as it's the brain causing the symtoms.
I just feel like I am not being listened to enough and still frustrated with the limbo.
I am due to go to the hospital again in Jan and the GP next Thursday night.
Any ideas?
Hugs
Jules
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Postby LoveActually » Mon Oct 05, 2009 1:17 pm

Hey Jules,

All the trouble you're having getting an appointment is completely unfair. I think you should do what many have already said and just keep pushing, demanding and whatever else you have to do to get treated, or even seen.

With all the symptoms you're experiencing and all the road blocks, I just can't believe you're having to go through that. Stay strong. Stay STRONG.

And yes, definitely mention everything to your neuro. I saw my new neuro last Tuesday and he spent an hour talking to me. He asked me about all my symptoms and then just asked some other questions to be sure I wasn't experiencing anything else. When he asked if my legs ever felt weak, I immediately answered, "No". But then I thought for a moment and mentioned that sometimes my knees will give out on me and it seems to accure in spurts. Turns out, that was information that was helpful to him.

So, you never know what's going to be important to your doc and finding a diagnosis. Tell him/her everything, no matter how embarassing it may be.

All the best to you, and thanks for mentioning the numb lips thing. That happened to me a couple of weekends ago, just the upper lip, and I blamed it on crappy lip gloss. Hmmm. I'll bring it up to my neuro when I see him again.
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Postby 71jules » Tue Oct 06, 2009 4:56 pm

Hi Loveactually

Firstly I cannot believe the way I have trouble typing now and the stupid spelling mistakes which aren't normal for me and embarass me, brain will you just work properly?

Now to thank you again for your post and I will keep pushing but it's a hard road to go and it's all up hill.
If there's no brain lesions Jules then YOU DEFINITELY DONT HAVE MS.
But what is it and why do I hear that you can have MS without brain lesions and some 10% can have invisible lesions?

My legs get so weak they won't allow me to stand and I am wobble all over and need my husband to take my weight and my legs go outward in front and it is an effort to walk, think of a ragdoll.

My lips are numb quite often which in itself can make talking difficult, rather like the after effects of the dentist.

I hope you are getting somewhere and sounds like you have found a Neuro who is listening to you.
Even though mine is I think she could be doing more instead of suggesting a rare brain disease with no cure and sending me on my merry way, see you January, grrrrrrrrrrrrrrrrrrrrrrrrr.

Thanking everyone again for the support here and to those undiagnosed keep fighting and pushing as I will. To those already diagnosed stay strong and I am thinking of you all on a daily basis.

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 71jules » Thu Oct 08, 2009 7:03 pm

:roll: I know this is a long shot but if there is anyone on here that lives in Queensland, Australia can you please recommend a good listening Neuro for me PLEASE?

I have had enough of all this now and am at my wits end.

I do realise most of you are in USA but you never know I might be lucky.

Hugs
Jules
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Postby Needled » Thu Oct 08, 2009 7:11 pm

Oh Jewels, it didn't go well? :cry: You've had such a difficult time with all of this. I wish I had some suggestions for you. But tell us what happened and maybe someone can come up with some new ideas.
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Postby 71jules » Thu Oct 08, 2009 7:59 pm

:cry: Hi Needled, thank you so much but unfortunately it's the same old answer, no lesions on your mri scan so you do not have ms.
Today is a baddy, I am off swaying to the left, having trouble thinking while talking and my head feels so weird along with electric shock like in my abdomen some shoot to the top of my body.
I am sorry but I really feel the need to vent and it's not aimed at anyone but it might help me.
:x :? :( :cry: :?: :?: :?: :?: :!:
There, that about say's it all.
Thank you again.

Hugs
Jules
xo
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Postby 71jules » Thu Oct 08, 2009 8:01 pm

:? One MRI scan, that's it and it's 100% no MS?
:?: :?: :?: :?: :?: :?: :?: :?: :?: :?: :?: :?:
:idea: Maybe one Dr might wrap their wing around me and help me find out why exactly all this is happening or a least do another MRI in 6 months to 12 months.
:roll: :roll: :roll: :roll: :cry: :cry: :cry: :cry:
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 LR1234 » Fri Oct 09, 2009 1:27 am

I had clear MRI's for many many years. I wouldn't rule out MS 100% based on a clear MRI
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Postby 71jules » Fri Oct 09, 2009 2:02 am

Thank you for that information, I am so curious how often it happens when MRI's of the brain are clear before finally a lesion may show and MS gets diagnosed.
I appreciate the feedback.
Jules :wink:
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Postby LR1234 » Fri Oct 09, 2009 2:26 am

I don't know how common it is. My dr told me 100% I do not have MS.
Then that changed to a definite dx of MS. Did they use gadolinium contrast? The reason I ask is I never was given a contrast MRI until the last MRI...maybe something would have shown up earlier with the contrast. Also did they do a spinal MRI?

L x
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Postby 71jules » Fri Oct 09, 2009 3:49 am

Hi again

They did use contrast but usure which one and they did scan the spine, no lumbar puncture though.
I can't believe they have ruled it out 1oo% and have not mentioned doing another MRI.
I don't know how to push these Dr's to listen but as of today I will make a diary of symptoms.

Thanking you for your help.

Jules
x
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Postby 71jules » Sat Oct 10, 2009 5:04 pm

Hi again I am going to ask a question that may seem dumb but feel the need.
I have read that around 95% of MS patients have a positive spinal tap and if this is right is it possible for no lesions to be found on a first MRI but for the spinal tap to show positive?
I am finding as information for my next visit with the GP on Friday morning to discuss going to yet another Neuro.
Hope someone may be able to shed some light on this question please?
Thanking you all so much again.
Jules
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Postby Just_Me » Sat Oct 10, 2009 5:10 pm

LR1234 wrote:I had clear MRI's for many many years. I wouldn't rule out MS 100% based on a clear MRI

From what I have read it can take 10+ yrs before MS shows on an MRI. I was told a year ago (by a different doc who admitted he had no clue) that I definately did not have MS.

I hope you can find a good neuro and the help you need. (((((hugs))))
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