Last reply 2 months ago
Dr says because I don’t have the bands

Dr says because the spinal tap came back without bands that I don’t have ms I don’t want it or need it but I still have the ms lesions on my brain they said they were from headaches but if they are why did they tell me that I had a 98% possiblity of ms and I still have symptoms of ms but they said that it was just headaches like what ? The Drs are supposed to be smarter than me I don’t understand but I’m grateful they said that I come back in 6 months for another spinal tap and mri what should I do

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dalebrooks
2 months ago

Very grateful but if they are so sure I don’t have it why get tested again


highlander
2 months ago

@dalebrooks
Hi
The doctor’s are doing things right to be fair to them… They have to find bands in the fluid and lesions on the brain or spine.
They have to meet a threshold called the McDonald criteria before they can give a 100% dx of MS.
It’s very hard to retract it once you’ve got it to be honest.
It’s not great to be stuck in limbo land which is where you are at the moment, there’s a fair few of us here that know exactly how your feeling.
For all they know you could have been born with the lesions, highly unlikely I know but they have to make sure.
I’m sure @stumbler can elaborate more on this for you but I’m sure he’s sleeping at the moment it’s 2am here in the UK.
I have trouble sleeping another MS thing that keeps life interesting.


dalebrooks
2 months ago

@highlander thanks for your advice it sucks I have symptoms but no diagnosis and the nurse practitioner that I see acted like I’m making it up


highlander
2 months ago

@dalebrooks
I know exactly how that feels….
Even from my designated nurse and she’s supposed to understand.
The only thing to do is stand your ground remember their there to help you.
Ask for a second opinion if it comes to it your the customer so to speak…the American’s I’ve met and worked with always seemed to stand by that principle.
Good luck.
Your the boss don’t forget.


dalebrooks
2 months ago

@highlander I’m grateful that people like you are willing to give good advice and explain to people that they aren’t the only ones thank you so much I really mean it


highlander
2 months ago

@dalebrooks
Thank you….some good wee lass called @vivien kinda done the same for me.
We’ve all been where you are to some extent or another.
This place is great, we all try and help one another when we can.
Now I’m ready for bed 4am now finally I’m tired!
Keep smiling it helps.
Night or morning!


dalebrooks
2 months ago

It’s 8 pm on Tuesday here in Las Vegas Nevada in the USA have a good nights sleep


stumbler
2 months ago

@dalebrooks , MS is notoriously difficult to diagnose as the symptoms do present in all manner of other conditions too. It’s almost a question of eliminate the probables and investigate the possibles.

As mentioned, the Mcdonald Criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria) have to be satisfied before a formal diagnosis can be made.

It is not that unusual for one or other of the tests to be inconclusive, hence the review in 6 months time.

I realise that this is frustrating for you, but you have to appreciate that our bodies are quite complex and Doctors aren’t magicians. You just have to be patient……..


dalebrooks
2 months ago

@stumbler thanks for replying I’m more frustrated with my body then the dr I just feel like I’m going a little crazy with symptoms and no disease but I guess no news is good news and I am grateful to be able to act “ normal “ through the pain and go to work and pretend like everything is ok when I’m falling aspartame’s on the inside I’m not ok but I have to be ok with that and I have people that love me and support me it’s hard but I’ll get through I’m sorry for complaining and not being a more grateful person I’m great full that I have to be strong at least I can show my kids how to be and I’m grateful I have Drs that check for things like ms they said I have a lot of lesions on my brain they just can find any on my spine and they think they are just from normal headaches which is weird but I’m grateful I don’t have brain cancer it could be a lot worse thanks for replying sometimes I forget how grateful I am or should be thanks for reminding me


dalebrooks
2 months ago

Just ranting and I’m sorry


hollylb10
2 months ago

I have never had a spinal tap and I have been diagnosed!


dalebrooks
2 months ago

@hollylb10 they said that is you have lesions on your spine and in your brain they can tell from the mri and you won’t need a spinal tap they found the ones on my brain but nothing on my spine so they said it could be a case of ms that is just hidden but for right now what they are going with is that all my problems are caused by headaches and I just need to tough it out but before they got the results of the spinal tap they told me that they were 98% sure I had ms and that the spinal tap was the proof they needed now I feel like I’m some crazy person having symptoms of a disease I don’t have what to do this is weird


stumbler
2 months ago

@dalebrooks , you don’t need to apologise for the way you’re feeling. Most of us have been there and understand.

It’s best to get these things out, rather than bottle them up.


hollylb10
2 months ago

I have never shown lesions on my spine either, my first ever proper symptom was in my legs and pain and altered sensations have already been in my legs. The first scan I had was spinal that was clear. Then a year later it was brain scan! So weird how patients are told differently!

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