No lesions on brain scan: I’ve had a home... - My MSAA Community

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No lesions on brain scan

Kernowdot profile image

I’ve had a home visit from my doctor today. I’ve had lots of issues for over eight months.

My neurologist has ruled out MS due to the scan being clear. No lesions on the brain or spine.

My MRI was done without contrast - has anyone had a MS diagnosis following a clear brain and spine MRI?

My doctor this morning said he still thinks everything points in that direction, so if not MS it must be something else neurological.

I’m awaiting results from nerve conduction studies and haven’t had a lumbar puncture yet.

I’d like to understand if MS is still a possibility following clear scan results.

22 Replies

You might have clinically isolated syndrome which is a precursor to MS. My diagnosis was based on neurological cognitive testing. What’s good is that you can still start medication with CIS if the lumbar puncture is positive

Kernowdot profile image
Kernowdot in reply to Sandydemop

Thank you for replying and exactly the kind of reply I was hoping for.

There are so many first cousin diseases that go hand in hand with each other MS being 1 of over 500,000. It is usually a case eliminating them 1 at a time that is why it is so hard to diagnose MS & I have known a couple of people who were 10 plus years waiting to be diagnosed. Hope yours goes faster than that. Mary

Kernowdot profile image
Kernowdot in reply to kycmary

Thank you for your reply.

There are a few possibilities - it seems that MS hasn’t been fully eliminated yet.

Fingers crossed for a sub ten year diagnosis then !!

Sandydemop profile image
Sandydemop in reply to Kernowdot

once you know what you have you can deal with it.

kycmary profile image
kycmary in reply to Kernowdot

I am praying!

Sorry about your issues. Good luck with your lumbar puncture. Home visit from doctor? Nice

I had a clear MRI of the brain when I had a CIS (Clinically Isolated Syndrome) over 30 years ago, but that was in the more primitive stage of MRI use and may be part of the reason no lesions showed up then. I hope you don't have to wait 25 years for a diagnosis! I was relieved when I finally got the diagnosis and could have an explanation for all the weird symptoms I've had for years, as well as have a diagnosis to start treatment.

Keep us posted about your next test results.

Amen

I wud think they wud have done MRI with contrast as well as without. My first test was the lumbar puncture which led to my diagnoses then had MRI

So ive had pins needles in my feet weakness in legs cant walk proper Headaches that r like someone hammering in my head i jerks in my sleep & tremor hands & yet still i dont get anywhere

Klutzy profile image
Klutzy in reply to Di01

Me, too! I have all those same as you and more. I get those horrendous headaches you describe, worse than any migraine. I have a unique thing of a tongue spasm, had it for 5 years. Saw a YouTube video of a woman who had it just like mine, and she had MS. Yet I couldn't even get MRI when I saw neuro. It's frustrating when we're just stuck! Hang in there!

Hopefully the nerve conduction study results will provide more clues for you. I started having symptoms of MS in my 20s (in my early 50s now). I had alarming symptoms when I saw neurologist (couldn't walk a straight line, leg weakness, couldn't stand one one leg, difficulty walking, numbness, blurry vision, etc). Neuro wouldn't refer me for MRI. So you are fortunate you had the MRI, even if you did not get the results you expected. Maybe your lumbar puncture will give more clues to whether it is MS or not.

Here are other diseases that can mimic MS that is on the MS website. Hope you get answers soon!!

nationalmssociety.org/Sympt...

Di01 profile image
Di01 in reply to Klutzy

Hi klutzy aw thanks long rd atm so frustrating aint it ,i've not even got a neurologist been waiting 7 months for one on nhs cant cope now with having these symptoms my hands curl up & i'm getting worse with my hand shaking decided i cant wait any longer so going private but once feeling like this every day is a struggle & even waiting just a day is draining im at the fatigued point in it all to which doesn't help my mental state wonder if anyone else knows what meds to take when the depression cracks in with ms xx

Klutzy profile image
Klutzy in reply to Di01

I feel your frustration and understand your struggles. Yes, when the fatigue comes it's awful. I'm guessing you're in the UK whereas I'm in the US. But good thing you're going private. I don't understand how some (even when I read off this site) seem to get all the tests with just a few symptoms and others with many can't. It's mind boggling, and it makes me think it's luck of the draw. I saw neuro not because the doctor I saw referred me, but because others in his office who saw me asked the neuro to see me. After I see rheumy for unrelated things, I'm gong to see another neuro. Sorry i don't know about what to take for depression, except maybe St. John's Wort supplement. Take care and don't lose hope!

mayoclinic.org/drugs-supple...

Di01 profile image
Di01 in reply to Klutzy

Aw thanks trying to just get thru the day is really debilitating Same i have a friend she had a fit & they got her seen to straight away told her she had fnd getting treatment now & got her life back a bit this condition effects everyday life i've been pushing for answers for 7 months now & been waiting 6 on nhs list for neurologist was only suppose to be 13 wk wait but now there telling me it'l be another 2 months to wait & then it'l be telephone appointment at that winds me up by time i get a proper test or to at least see them it'l be christmas & then i'l of suffered a full yr have no choice now to seek private help because my legs r weak can hardly walking & getting odd behaviour changes that r driving me insane sleeping but neva feel the benefit of that & restricted now to my bedroom :( 🤞that i'l get somewhere very soon & i hope u too find the answers to your own search xx

Klutzy profile image
Klutzy in reply to Di01

That stinks that now you have to wait longer. I started trying to find answers 5 years ago, but never got anywhere. So I just gave up and did my best to adjust and just live with whatever I have because I had it with the doctor and neuro I saw. But each year, my life is more impacted and things are harder to do. So you keep fighting until you get the answers, not just any but the correct ones! And don't wait years as I did. You're not alone. They are so many like us, the OP and others who are just stuck in limbo.

Di01 profile image
Di01 in reply to Klutzy

Have u been tested for the following Parkinson or Cushing disease ?

Klutzy profile image
Klutzy in reply to Di01

I doubt it’s PE because I don’t shuffle, nor do I have a pill rolling tremor that’s specific to PD. I have an intention tremor.

:( sad u cant get a diagnosis after 5 yrs dunno if i could cope with what im going thru for that long meds seem to make me worse so i try best not to take them but drs keep telling me take something my body feels dead & brain just tells me to smoke pick & bite my nails like im nervous drives me potty i'm pratically at the drs each wk fighting my corner to get them listen but hoping i get answers soon since i'm paying out for loads of test privately nothing about this condition i can adapted to 😭

Klutzy profile image
Klutzy in reply to Di01

Keep being persistent until you get answers and the rift ones. Unlike you. I just gave up seeing doctors. I knew I’d have to wait for my symptoms to be more pronounced, which they are. Neuro I saw never tested me for MS, although I had/have received symptoms. But he was young. It’s luck of the draw of which doctor or specialist will actually want to help and find answers. Best of luck to you!

Thanks getting me down now all this want to get it sorted as can i cope with some of the symptoms but the head pressure is the worst thing eva not getting rid of the pain not even pain killer do anything :(

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