SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
MRA/MRI yesterday.
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This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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MRA/MRI yesterday.

Hi all

I just thought I'd tell you that I went for the MRIs/MRAs yesterday. Thank goodness they have some new machines which are smaller and less intimidating. I was surprised though that they're only T1.5 strength/resolution. I read that there are already T7s in use in the US! Has anyone heard of these?

Not wishing to tempt fate, but the contrast seemed to go down/through me well.  But I got out of the machine and simply couldn't get my balance or walk well. I stumbled badly a couple of times and completely lost it in the changing cublicle - ended up in a heap all over the chair and wedged against a locker.

What was that about?! I don't normally get physical/falling down reactions from stress or nervousness, when push comes to shove I'm as stoic and Mrs Spock as can be. But who knows? I wonder if it had anything to do with the very uncomfortable way I was lying flat out with no neck support for 30=40mins? Anyone else encountered this reaction?

The young guys who did the scan were nice and professionally efficient. I wondered as I was lying there what they get up to when there are no patients to scan. Turns out that these chaps have full sets of MRIs of all their own body parts! (There's a novel line: 'would you like to see my personal MRI collection?' LOL)

So, thank goodness I had two large men to hold me up (my son and his dad). The odd reaction was very unexpected. They took me to a nice cafe and we sat in the sun and had lattes and toffee coffee cake and tried to work out the name of the famous tv actor who was at the next table talking shop.

I also collected my horrendously expensive scan/xray copies. This is the first time I'd ever seen my brain and c-spine. Fascinating. I love my pretty and delicately fronded cerebellum! And i discovered that I have a broken nose!! Must have done that when I was a tiny. The brain MRI looks unexceptional apart from upper cervical issues that don't look right to me.

The xray from last Dec though is a bit of a roadkill mess. Lots and lots of anomalies, worse than I expected. I can't believe that the nice neuro wasn't interested even to take a glance at it. It seems pretty obvious to me, even as a lay person, that this much mess would cause all the sx I have. The MRI/As will be more helpful I'm sure. More waiting then...

All in all, though, a good day and another few millimetres towards the Limboland exit...
hugs
sammxx
9 Comments
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1056589_tn?1273750702
Sam,
Sounds like you had a fun time....LOL

I am a bit dizzy sometimes after mri's too..I have no idea why.....


Let us know what the findings are......

Take Care, Theresa
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956292_tn?1334058469
Hi silks,

I am sorry you had a bad time from MRI.. I can't say I ever had the same reaction...

Thankfully you had some help from your son and  his Dad. Sounds like the cafe was fun. I love latte's..TOFFEE CAKE? OMG sounds yumms

I have never seen my brain on film..hmmm I can't beleive your nose???? do remember anything that happened for that?

Well, i hope this is a step forward..Keep us posted..

Jibby
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Hi Silkcut
Sorry to hear of you bad experience after MRI, your 2 big men seem to have their heads screwed on taking you for coffee and cake... can I borrow them next time I have an MRI LOL.
Hope you get some results soon and get out of limboland soon.
Suzanne
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1137779_tn?1281546105
Actually, Theresa, you're right, I had as much of a fun time as an MRI day can offer!

But you've had a dizzy reaction too? Have you had the gadolinium contrast too? I tend to think that the odd balance/falling effects were more to do with the 'wrong' angle of my neck for a long period. Blocked, sluggish blood vessels? Nerve impingement? I have bad loss of lordosis as well as new bone growth all over the place. In daily life I'm gently exercising my neck all the time naturally and find that a neck cushion or feather pillow in just the right spot helps me avoid the falling down/vision loss/numb hand and face etc.

The toffee cake...with fresh cream...latte..sunshine...what can I say...? ;-)

I'd really recommend you get hold of your MRIs etc, they're absolutely fascinating. Who'd have thought - a broken nose! The only thing I can think of is when I left home when I was toddling. I had my grandma's knitting bag, her hat and gloves on. Mum said that I fell all the way down a flight of steps after my begloved hand didn't make contact with the railing. LOL!! I seem to remember she said she had to pull my nose back into shape. Maybe it was that.

hugs
samxx
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956292_tn?1334058469
ouch! You poor thing...good thing Mom put in place for you..

Jibs
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1056589_tn?1273750702
sam,
I have had the gandolinium .I too tend to think it's my neck causing the problem.My necks a disaster..Degenerative disease and dextroscoliosis...While I have been told it is relativly mild it can still cause all sorts of weirdness.My neck pretty much hurts to some degree all the time.
Only thing with the contrast is that I can smell it and taste it..It reminds me of pennies smell like...Weird????  

I have all of mt mri's and I had to show my family where the spots/lesions are....

The broken nose is crazy...It's amazing what we as children can withstand.If that happened to you now it would probably kill ya....LOL

Take Care, Theresa
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1137779_tn?1281546105
I'll snip the nose pic and post it on my photos section in my profile. NOW I know why I've always had such bother from time to time. Of course, doctors have always sort of dismissed it...

A good lesson - there's always a physical reason for physical sx. And kids are so robust,it's true.

I wouldn't be able to discern what are significant spots/WML or not. I do wonder what all the little black blobs are though. I'm thinking they must be either the cross sections of blood vessels or alien implants.

hugs
samxx
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1056589_tn?1273750702
I vote for alien implants....
I did live in Arizona a very long time and thats the mecca of alien abductions.....

The Truth Is Out There.......(yes I was a huge x-files nerd)
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1137779_tn?1281546105
oh, goodness...me too. That's how I know that the vast majority of brain probs are actually to do with abductions....

Gosh. Arizona. woowwoooo....;-)
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