Last reply 6 years ago
The Long Awaited Appointment…HELP!?!

At the beginning of 2011 I had a major flare up/relapse really knocked me on my ass. After being tossed back and forth between specialists and the crazy wait to get in to see each one, I finally got in to see the neurologist. But the flare up was over at this point and neurologist didn’t take me seriously. She spent less then 30 minutes in the room with me, rushed me through telling her what was going on with me, rushed through a general neuro exam and then sent me on my way with a referral for an MRI and a blood test. Everything came back negative and she told me ‘Its not MS. Go back to your GP’. It felt very much like I was a kid screaming that there was a monster in my room…she checked under the bed, declared that no monster exists, and left it at that. She didn’t bother to truly check for the monster.
And thats where I have been stuck since. My GP can’t and won’t do anything about my symptoms because she doesn’t know whats wrong. I’ve seen quite a few other doctors…all of them are impressed by the carelessness of the neuro I saw and tell me to go see another one. I have a symptom list that is pages long and am now at the beginning of yet another flare up.

On July 10th I have an appointment with the head neurologist in the neuro-muscular department at one of the top hospitals in my area. I was terribly lucky to get in…since when I tried last time (after the dismissal from the last neuro) they denied me. And this is pretty much my last hope for a dx.

If anyone has any suggestions or information on how I should prepare for this appointment it would be greatly appreciated!! I want to make sure I give myself the best chance possible for finally getting a dx.

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Anonymous
6 years ago

Oh…and just to illustrated just how much the last neurologist didn’t care….

My GP gave up on trying to figure out whats going on with me when my only symptom was severe spasticity with spasms. She sent me to the physiatrist. I saw him at the height of the flare up and HE heard all of my crazy symptoms. He sent over my symptom list and information to the neurologist.
When the neurologist was done with me and told me to go back to my GP? She sent over my information. Come my next appointment with my GP I find out she didn’t actually send over the full report. She sent over my MRI results, blood results, and stated that I was suffering from dizziness and that her dx for me was vertigo.
My vertigo was the least of my symptom complaints. The numb leg, tingling, and severe spasticity were far more worrisome to me then the vertigo.
I had to tell my GP everything myself.


Anonymous
6 years ago

Oh..and the referral for the MRI came from the Physiatrist…not the neurologist.


Becks
6 years ago

have u had any nerve conducton studies done or a lumbar puncture?? the only reason i ask is because when i was diagnosed (many moons ago) there were 3 main tests for ms – not sure what the current thinking is tho – i had nerve conduction studies done 1st (6 yrs before i had been misdiagnosed with CFS and i then presented with another what i now know is a relapse and my GP misdiagnosed carpel tunnel syndrome so was sent for nerve conduction studies t show the carpal tunnel) The neurophysioligist i saw twigged that it wasn’t carpel tunnel and tested me for ms without me realsiing – i spectacularly failed and my GP admitted me into hospital (yes in the good ole days you were admitted to hospital for your 3 day iv steroids!!) and whilst an in-patient i had an mri scan and lumbar puncture – again spectacular fails so there was no doubt i had ms – there wasn’t a blood test done so it makes me wonder if the way to diagnose has changed???!!!!???? if not ask if you can be referred for lumbar puncture/nerve conduction studies?? also was the mri scan head only or head and back? when i was diagnosed it was head only and that was all i needed – but i’ve been fighting to be put on tysabri and to try and show active lesions i had several mri scans but this time of the head and full length of the spinal cord – is this of any help or should i stop rabbiting on? 🙂 i’ll think of other stuff too – but thought this might be a starting point? x x 🙂


f3ng5hu1
6 years ago

Good advice from becks there chelz.

It was a lumbar puncture that finally confirmed my ms after i’d initially been admitted to hospital with optical neuritis (I was very surprised when they admitted me for this).
I expected it to hurt too re the lumbar but it went flawlessly, in fact I felt the actual lumbar needle less than I did the injection they gave to numb the area.

I understand your frustration though, in that you have these symptoms and yet no positive diagnosis of them has been given or means to stop those things happening, so your kinda stuck in a rut. it must be driving you crazy.

I hope you get some results on this soon one way or another.


Anonymous
6 years ago

@Becks
Nope! Like I said…the Neurologist I saw tried to get me out of her hair as soon as possible. The Physiatrist I saw was the one who thought MS and wanted an MRI…which means I needed to see the Neurologist. Me and my family truly got the impression that she just did what was the bare minimum to get me out of her office. She ordered the blood tests to check B12 levels and for Lyme and other such things.
The MRI was of my brain and C-spine. With and without contrast (although I don’t know how thin the slices were or how strong the MRI machine was…both can determine an accurate or inaccurate MRI for MS.) It was negative.
It was after the negative tests that she declared that I don’t have MS and that was that.

I’m hoping that this NEW neurologist at this new hospital will be more thorough. I’m hoping for the Lumbar and nerve conduction studies.
Just hoping to do everything I can to make the new neurologist understand my situation in full so I can get some help. Want to make the most of my next appointment!

I’m walking with a cane and have so many symptoms I can barely manage to keep track of them all.
Plus it would be wonderful if I could have some proof to give to my boss to show that I’m not some crazy lazy employee making up stories.


loulou
6 years ago

Chels just to add, I was also diagnosed via a lumbar puncture, push all you can for one this when you see your new neuro, infact Demand one of these ! x


Anonymous
6 years ago

I plan to. 5% of MS patients don’t show lesions on their MRIs in the beginning….so no matter what it needs to be done to definitively rule out or diagnose MS.

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