Ten months ago I woke up and my right arm was dead. Eight months ago they conducted an MRI on my upper back then did surgery because of arthritis in my spine - my right arm very slowly got better. Four months ago my left arm went dead so I met with my Surgeon. He sent me for another spine MRI which showed nothing.
The Surgeon sent me to a Neurologist who conducted a Lumbar Puncture two months ago. (I watched This Is Spinal Tap the night before - LOL.) The fluid was clear; I was sent home immediately afterward with no side effects. They then set up a Brain MRI for early January.
I met my Neurologist in his office a few weeks ago; he sat me in front of his computer screen & showed me the visualisation. White lightning bolts coming from the skull into the centre of my brain. Primary Progressive MS confirmed.
No idea how they put the pieces of the puzzle together; I do not even want to know. They are the experts so I trusted them. Now I can plan my future accordingly!
When I was 20…which was 37 years ago (ouch) :-), I had numbness down one side of my body, and double vision. My doctor ordered a couple of tests because he suspected MS. One of the tests was a lumbar puncture. Back in those days you had to stay in hospital overnight. Following the LP you had to lie down for 24 hours. So I had the procedure, lay down for 24 hours and I went home the following day. LP itself was uncomfortable but nothing more. Absolutely no headache whatsoever.
After the tests my doctor couldn’t tell me whether i had MS or not. So I took the NOT option and got on with my life.
Fast forward about 20 years and I started to get some small symptoms. MS was the last thing on my mind so I put them down to anything and everything…time of my life…time of the month - that sort of thing.
In 2015 I devel oped a limp, and noticed that the right side of my body was weaker than the left. Went to the doc…was referred to a neurologist and the testing started. As before one of the tests was a lumbar puncture - wasn’t at all worried cos i’d had one before and I knew it was really nothing to worry about. This time though they only kept you lying down for 4 hours after the LP then you get to go home. All was well on the day but the following morning after I got up I started to develop the headache from hell. It lasted a good few days but was totally resolved by lying down.
So - thats my tale - two lumbar punctures - both of which were fine…just one headache from hell. Following the LP I was diagnosed with MS.
For what it’s worth I don’t believe any doctor enjoys causing pain but they do like to get a diagnosis correct and I believe it’s only right and proper to have all the tests necessary for them to do their job.
I picked up this thread a bit late, but found it a hilarious read.
Is the OP a troll, or merely someone who has spent too much time with DR Google, and is unable to understand the real facts?
So there is the first clue:
People are NOT mostly diagnosed by MRI.
The University of Birmingham regard the presence of Oligoclonal Bands in the CSF as a “Gold Standard” test for MS.
In the US, VEPs are regarded as the best tool for early Dx of MS.
In any event, diagnosis of MS is a process of elimination.
There is a great commonality of symptoms between MS and Parkinson’s Disease (circa 80%-85%).
PD is usually diagnosed by the response to a dopamine based medication (eg Sinemet) though some nerve conduction tests, and maybe an MRI are carried out to ensure that a case of MS has not been missed.
So, to attempt to answer the question above:
The OP is possibly someone who has spent too much time with DR Google, and is unable to understand the real facts, because they have not read all the material.
I know someone like this who spent so much time arguing that she had every condition known to the medical profession that she ended up with a diagnosis of Borderline Personality Disorder.
Another possibility is that the OP thinks they have a right to instant examination by our under-funded health service, and is angry that they cannot jump the queue.
And the possibility remains that they are, in fact a Troll
That is a ridiculous statement, I’ve had both an MRI and the Lumbar Puncture because diagnosis isnt easy and the neurologist needs to gather all evidence before the given you a formal diagnosis, imagine how annoyed you would be if you got misdiagnosed!
No, an LP isn’t always needed as sometimes imaging is enough but what the point in putting it off if it will help get the answers you want? You only ever hear horror stories of many things, like tattoos and piercings for an example, my LP wasn’t nice at all, it was very painful, and I am underweight so that didn’t help either, but I knew it was a necessary evil that I had to endure! If you disagree with the use of a spinal tap don’t have one, its that simple, you can always refuse procedures!
And I deffo would advise laying down afterwards, it isn’t a myth that this is tried and tested, caffeine and sugary drinks also help with the headache. Think of it this way, your Cerebrospinal Fluid cushions your brain, when some of that is drained away by a needle you need to replace the things you’ve lost, and thats what causes a headache, I was lucky and didn’t have one just a sore back for a few days.
Everyone is born to die, stop bringing everyone else down with you, either have the tests done or stop complaining. Its a depressing time dealing with this, but the NHS are doing everything they can, you have to remember there are hundreds of people just like you and you just have to wait your turn, unless you fall acutely unwell like I did you will have to wait im afraid for the tests.
Please consider your threads before you start posting your brain vomit, it can be upsetting to people who are very unwell with MS and dealing with this the best way they can. This forum is for helping each other out.
In the light of the OP’s response to another newbie, I want to revise my comments in post #67 above:
I suspect that the OP is a male who has spent too much time with Dr Google chasing every single symptom (real or imagined) and has convinced himself that he has MS.
As a result he is now at the first stage of the Kubler-Ross model of grief management (anger), and is lashing out at anybody who dares to challenge his miss-guided opinion.
Accordingly, my suggestion of Borderline Personality Disorder is withdrawn.
You cannot be at any stage of kubleer Ross unless you’re dying of terminal illness. You don’t believe I am terminally ill even if I do so your assessment is incorrect.
Dr Geoff has made an entirely valid objective assesment of your reaction to your (self made) diagnosis and your assesment of what that would entail. The (objectively justifiable) fact that this “diagnosis” is a not supported by any reasonable analysis of the facts is neither here or there.
In fact the only criticism I do have of Dr Geoff’s assesment of your reaction to your erroneous self diagnosis is that I, for one, think that he is being unreasonably generous and charitable to you in reaching it! I just think that you enjoy being a self-obsessed **** who gets pleasure from saying things you know will wind people up!!! You, Sir/Madam are this forum’s answer to Katie Hopkins and I claim my £5 :))
Your right Polls, got caught up with this dingbat in a previous post, unfortunately he/she is enjoying the rise “its” getting out of us all, very sad person with a very sad life, so very sad. Tracey x
I’ve just read the post about the process , thank you Polls. My neuro didn’t get me to walk or do the heal thing. and I haven’t had an LP. Do you think I should ask for an LP. ?? He’s diagnosed me with migraine aura and spondylosis.