Hi everyone,
Just got back from the Neuro and the results.
All was normal, including spinal tap.
So she is like: Definitely not a case of nerve inflammation(neuropathy) as often is seen with Lupus.
"We checked for things like MS and all was normal too."
Yeah ok, but in so many percent even spinal taps/MRI's/EP's can be normal, yet can still have MS or have it sho up later!Like cases of Lupus and other immune diseases.
Ok she goes and discusses with a the Prof.
NOTE: it wasn't the one she had dicussed wiht the last time it was that old goofty Prof.that did the unprofessional EP's by me yesterday..wow.
So she comes back and of course mentions..'There is people with hyperventilation or a chronical case of this etc etc bla bla"
But I go: I'm not a nervous person..
And also, by hyperventilation is too muxh oxygen correct?Breathing too rapid or so.
Well, when I sometimes get this like now..as I've been told I'm 'crazy' once again.
I do have it a little but I also started with this weird uncomfy feeling that some people refer to as a girdle feeling and pain in the torso/ribs, like it started after sunexposure yesterday already.
I mentioned this and yeah she probably had that in mind and mentions hyperventilation+Because she doesn't know either what it is due to normal results for now.
Aswell hyperventilation, if you breathing is calm and controlled as I'd say with like tummy excercises or anything, the supposed to be tingling should go away, correct?
Or the numbness or whatever else it can cause.
Wel it's nonsense!! My symptoms are constant and they worsened, it all started to worsen when I got the flu 3 times in 3 weeks like it somehow got triggered.
Same thing as two weeks ago now, I felt flu-alike+A lady with a fzever was next to me in the hospital and yes it is self explaining.
+If this is a 'case of being nutty' again, what explains my constant pupils dilation, eye pain, worsening of heat, electric shock in back hen neck is flexed(L'hermitte my other neuro said)And like the unequal pupils, colourvision trouble, vision itself, at times doublevision, balance, loss of feeling like I can't feel my clothes on my skin and ligh ttouches or 'sense' my arm as like my brain doesn't know I have a arm.It's like it just hangs there or it's someone elses to say it like that.Heat makes it all worse..
Not to mention my damage t omybladder ,neurogenic.Or my HORRIBLE memory, I can't recall what I did yesterday or if I take my meds in the morning, I immediately forget after I swalloed-if I took it or not.And then my speech issues, I often cannot express myself or my tone changes, I sound nasal, my walking is affected.
Being only 17, it's ridiculous.
Also, if you read up hyperventilation, it mentions tingling and such or numbness but it doesn't say burning or eletrical shocks/bug biting alike feeling in limbs.It's just pathetic and it makes me so mad currently.
It terrifies me now to think of what if it gets worse and I just don't know.
The testing here was so unprofessional, that rude Prof that disd the EP's only did two out of 'all' whicg hare 4 of those.
He didn't even use actual eyepatches in the VEP.
And he walks like a drunk himself and barely heard me if I tried to explain things.
And to top it of, that supposed t obe called 'Neuro' that blamed all my symptoms and normal results on hyperventilation or whatever nutty, she was only an Assisant again!
I just knew it.
Lasst time when I went to my first Rheumatologist, he was an assistant and he also said it is definitely not a case of things like Lupus or inflammatory disease, just because I had not swollen joints yet and all.
Yeah, two months later...all those symptoms appear and I get diagnosed with Lupus and Sjögren.
It's too funny for words, mom is mad too.
I'm so upset.=(
We are going to call Rheumy friday, I know he said himself I am not 'crazy' and I wiill make an appointlment at the children neurology.We did this first but due to Neuro-opthal also being a normal Neurologist thingy in general(Weird) we cancelled it, it was supposed to be on the 4th.
So that guy was a Prof.
And unlike here, we had made an appointment by a doctor but they gave us an assisant?
They don't even probably have exerpience with cases like mine or immune related issues.
And then during the examination she also said all was 'normal' but it wasn't! I couldn't stand without falling, with my eyes closed or my arms stretched out infront of me.
Walking on one line, feet after feet, nope.
Or then she asks me to pu tmy chin on my chest, I went back up halfway (the elctrical shock) so she goes again: just put it on your chest;;
Wow.=/ I just didn't say anything
It makes me laugh but so mad too.
We'll also make the appointment at the MS center today, go to my Gp this week, I might call my Opthalmologist and ask her abou ta few eye related things which they claimed t obe 'nothing'.And we'll see...
I refuse to sit here and wait untill I feel nothing or lose feeling in a limb, end up even more limited or anything.
They just like all -bleep- doctors,, like ths assisant..send you home and don't even say: If anythign, don't hestitate to call.Or something atleast with sympathy such as 'We'll see you in -amount of month's-
I just don't understand such people but I tell you, I'll prove them wrong.
Thank you for listening to my vent...
Hugs and love.
Also in the first consult paper before all the testing, it says I know the internet 'flora' well and due to that am able to describe my symptoms good..So they claimn because I know how to describe my symptoms good and all..I just make this up because I look 'too much' on the internet?
Pathetic.
Just got back from the Neuro and the results.
All was normal, including spinal tap.
So she is like: Definitely not a case of nerve inflammation(neuropathy) as often is seen with Lupus.
"We checked for things like MS and all was normal too."
Yeah ok, but in so many percent even spinal taps/MRI's/EP's can be normal, yet can still have MS or have it sho up later!Like cases of Lupus and other immune diseases.
Ok she goes and discusses with a the Prof.
NOTE: it wasn't the one she had dicussed wiht the last time it was that old goofty Prof.that did the unprofessional EP's by me yesterday..wow.
So she comes back and of course mentions..'There is people with hyperventilation or a chronical case of this etc etc bla bla"
But I go: I'm not a nervous person..
And also, by hyperventilation is too muxh oxygen correct?Breathing too rapid or so.
Well, when I sometimes get this like now..as I've been told I'm 'crazy' once again.
I do have it a little but I also started with this weird uncomfy feeling that some people refer to as a girdle feeling and pain in the torso/ribs, like it started after sunexposure yesterday already.
I mentioned this and yeah she probably had that in mind and mentions hyperventilation+Because she doesn't know either what it is due to normal results for now.
Aswell hyperventilation, if you breathing is calm and controlled as I'd say with like tummy excercises or anything, the supposed to be tingling should go away, correct?
Or the numbness or whatever else it can cause.
Wel it's nonsense!! My symptoms are constant and they worsened, it all started to worsen when I got the flu 3 times in 3 weeks like it somehow got triggered.
Same thing as two weeks ago now, I felt flu-alike+A lady with a fzever was next to me in the hospital and yes it is self explaining.
+If this is a 'case of being nutty' again, what explains my constant pupils dilation, eye pain, worsening of heat, electric shock in back hen neck is flexed(L'hermitte my other neuro said)And like the unequal pupils, colourvision trouble, vision itself, at times doublevision, balance, loss of feeling like I can't feel my clothes on my skin and ligh ttouches or 'sense' my arm as like my brain doesn't know I have a arm.It's like it just hangs there or it's someone elses to say it like that.Heat makes it all worse..
Not to mention my damage t omybladder ,neurogenic.Or my HORRIBLE memory, I can't recall what I did yesterday or if I take my meds in the morning, I immediately forget after I swalloed-if I took it or not.And then my speech issues, I often cannot express myself or my tone changes, I sound nasal, my walking is affected.
Being only 17, it's ridiculous.
Also, if you read up hyperventilation, it mentions tingling and such or numbness but it doesn't say burning or eletrical shocks/bug biting alike feeling in limbs.It's just pathetic and it makes me so mad currently.
It terrifies me now to think of what if it gets worse and I just don't know.
The testing here was so unprofessional, that rude Prof that disd the EP's only did two out of 'all' whicg hare 4 of those.
He didn't even use actual eyepatches in the VEP.
And he walks like a drunk himself and barely heard me if I tried to explain things.
And to top it of, that supposed t obe called 'Neuro' that blamed all my symptoms and normal results on hyperventilation or whatever nutty, she was only an Assisant again!
I just knew it.
Lasst time when I went to my first Rheumatologist, he was an assistant and he also said it is definitely not a case of things like Lupus or inflammatory disease, just because I had not swollen joints yet and all.
Yeah, two months later...all those symptoms appear and I get diagnosed with Lupus and Sjögren.
It's too funny for words, mom is mad too.
I'm so upset.=(
We are going to call Rheumy friday, I know he said himself I am not 'crazy' and I wiill make an appointlment at the children neurology.We did this first but due to Neuro-opthal also being a normal Neurologist thingy in general(Weird) we cancelled it, it was supposed to be on the 4th.
So that guy was a Prof.
And unlike here, we had made an appointment by a doctor but they gave us an assisant?
They don't even probably have exerpience with cases like mine or immune related issues.
And then during the examination she also said all was 'normal' but it wasn't! I couldn't stand without falling, with my eyes closed or my arms stretched out infront of me.
Walking on one line, feet after feet, nope.
Or then she asks me to pu tmy chin on my chest, I went back up halfway (the elctrical shock) so she goes again: just put it on your chest;;
Wow.=/ I just didn't say anything
It makes me laugh but so mad too.
We'll also make the appointment at the MS center today, go to my Gp this week, I might call my Opthalmologist and ask her abou ta few eye related things which they claimed t obe 'nothing'.And we'll see...
I refuse to sit here and wait untill I feel nothing or lose feeling in a limb, end up even more limited or anything.
They just like all -bleep- doctors,, like ths assisant..send you home and don't even say: If anythign, don't hestitate to call.Or something atleast with sympathy such as 'We'll see you in -amount of month's-
I just don't understand such people but I tell you, I'll prove them wrong.
Thank you for listening to my vent...
Hugs and love.
Also in the first consult paper before all the testing, it says I know the internet 'flora' well and due to that am able to describe my symptoms good..So they claimn because I know how to describe my symptoms good and all..I just make this up because I look 'too much' on the internet?
Pathetic.
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