how did you get diagnosed?

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how did you get diagnosed?

Postby 71jules » Sat Feb 14, 2009 2:32 am

:? Hi there, I am wondering anyone that is diagnosed with MS which I know is the majority of you, when you had your first visit with the Neuro and he perfomed balance tests, pricking tests, eye following test were you told it was all normal?

I was surprised how when the Neuro I had did those basic tests when I was there bright and early for 9am and at my best, he said that's great they all came up normal.
I know from what I read I wouldn't be getting my hopes up yet that MS won't turn out to be diagnosed until an MRI is done and worse case scenario a spinal tap to rule MS out.

I hope I am making sense to you all cause I feel like I am speaking gibbly gock, lol whatever that means.

Hope someone can help with my curious question please?

Thanking you.

Jules
:wink:
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Postby msmything » Sat Feb 14, 2009 5:10 am

Jules, the neuro will continue to do those tests every visit, at this point it is his way of establishing a baseline.
He'll look for changes in the heat, in the cold, etc.
He's also probably trying to find your 'weak point', the stuff that acts up every time your body is thinking about having a flare.
When's your MRI jules?
Please be sure it is not one of these open mris, the pictures are just not so good.
Be well
Be kinder than necessary, for everyone you meet is fighting some kind of battle..
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hi

Postby 71jules » Sat Feb 14, 2009 6:15 am

Hi mymsthing, no worries will be prepared that will happen again next appointment.
My MRI is April at this stage using general anaesthetic, the wait is taking its toll me. The stress is so much and the waiting game is not fun as I am sure you know that already.

Thank you for your reply.

Keep smiling.

Jules
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Postby lionheart » Sat Feb 14, 2009 11:02 am

Hi, Jules! It depends whether visiting your neuro you have a flare or not. If you're experiencing an exacerbation, then your tests, cannot come right, that's clear. At the same time, even you're an ms-er but in remission and doesn't suffer from any deficits, your tests can be perfect.
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thanks

Postby 71jules » Sat Feb 14, 2009 5:21 pm

Ok, I understand so even people who have maybe had MS for years can go to their Neuro and come up normal with the test he will do in the office?
Depends on whether you have a flare or not.

I will keep my mind open more now that having the normal tests show in the office when I was fine doesn't mean I am near out of the way of getting the diagnosis for MS.

Thanking you.

Jules
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Here's how I got diagnosed...

Postby Xenu » Sat Feb 14, 2009 5:43 pm

On June 26, 2007, I went to bed completely normal and healthy.

On June 27, 2007, I woke up completely numb from the waist down on the left side of my body. I went to the ER where they simply told me I had a back injury (in spite of not having injured myself in any way and having zero back pain). Within 48 hours later, the numbness had spread upward on the left side. I returned to the ER, where I was told "not to come back unless [I] lost control of my bladder or bowels."

Dutifully, I obeyed. 3 weeks passed. The numbness spread further. My right foot went numb. My buttocks and groin area went numb. My entire rectal area went numb, I lost 100% of my rectal tone (i.e. - my rectal *muscle* was *paralyzed*) and for a week I could not defecate. Doctors continued focusing on my back and spine, like idiots. My back and spine were fine. I returned to my GP once, twice, and by the third time she refused to see me and I overheard her telling the nurse that she thought I was "just doing this to get attention."

I demanded to see whatever other Dr. was working that day, and she agreed to see me. She did a rectal exam, confirming that I had no rectal tone whatsoever, and referred me to a neurologist. Within 5 minutes of the standard neurological exam, it was completely obvious that NOTHING was normal. I had extreme hyperreflexia (evidence of neurological damage) in my left leg.

Neuro did a spinal tap and admitted me to the hospital. The next day I had an MRI.

Spinal tap was "weakly positive." MRI was positive----7 lesions (6 brain, 1 T-spine). Two of the lesions were enhancing at the time of the MRI.

I was diagnosed with MS.
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Postby Xenu » Sat Feb 14, 2009 5:46 pm

PS:

Not a single one of my neurological exams since diagnosis has been normal. This is because I have permanent damage from my first two flare-ups. It is a myth that all neurological tests come back "normal" except during active flares. Ongoing inflammation and/or accumulated damage also play a big role.
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hi

Postby 71jules » Sat Feb 14, 2009 6:04 pm

:( Hi I am so so sorry to hear of what you went through, you poor thing.

I will cut a long story very very short and say that one of the specialist I have seen in the past which was a heamatologist said he could not help me anymore other than send me to a pyscologist. :cry: :x :(
I have seen a new specilist since and at this stage it is looking possible I have Vasculitis, which type yet is unknown but the symptoms of that are different to the ones of MS. I have been getting lesions some up to 12cm by 15cm across and some smaller spontaneously on my body. The photos of them are shocking and some turned into black bruising and there was multiple spontaneous bruising. The new specialist for that is a fantastic Vascular surgeon is looking after me.
I know what it is like to be made out that it is all in your head or for attention.

My family and friends have watched with their own eyes, me deteriorating with my health. Unable to talk properly, walk properly fatigue easily and severely amongst the other symptoms mentioned in earlier posts.
Of course this last paragraph is do with the MS symptoms not the vascular.

Take care and thanks.

Jules
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Postby jimmylegs » Sat Feb 14, 2009 6:24 pm

well jules i think it sounds like you had better read cheerleader's endothelial pdf file!!!
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hi again

Postby 71jules » Sat Feb 14, 2009 6:42 pm

Hi jimmylegs

How do I find that please?

Jules
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Postby NHE » Sat Feb 14, 2009 8:16 pm

71jules wrote:How do I find that please?

The link is in the signature area of any one of her posts.

NHE
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thanks for that

Postby 71jules » Sat Feb 14, 2009 10:12 pm

Thanks for that NHE.

Keep smiling :D
Jules
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Re: Avatar Image

Postby NHE » Sun Feb 15, 2009 12:42 am

Hi Jules,
Welcome to the ThisIsMS community. Please review the forum's guidelines for using an avatar photo. They state that the image must not be more than 80 x 80 pixels.

ThisIsMS wrote:Avatar control panel
Displays a small graphic image below your details in posts. Only one image can be displayed at a time, its width can be no greater than 80 pixels, the height no greater than 80 pixels, and the file size no more than 6 KB.


Please resize your current avatar photo using image editing software or use a different photo which conforms to the above guidelines.

Thanks, NHE
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Postby lionheart » Sun Feb 15, 2009 12:53 am

Hi Jules, as far as I understand you haven't been finally diagnozed yet?
You must have had something like a flare for the doubt to be raised, yes?
How were tests then, when you first visited your neurologist with complaints?

During my flares I have had some problems when tested but not now, I continue to think that if you don't have any deficits left you will come fine at the tests, not the mri though. You must be waiting for an MRI, right?

However this doesn't mean you have ms, I have heard of other deseases that can mimic ms quite successfully. I can't name them but have they ruled out neurovegetative dystonia (is this the name in En?) for example?

Sorry, I haven't read all your posts, so exuse me if I ask questions you have already clarified? But what and when were your first symptoms? And have they or others happened since then?
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sorry

Postby 71jules » Sun Feb 15, 2009 2:32 am

:( Sorry about that, have made one smaller, let me know if it is still too big.

Ta and soz.

Jules
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