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Advice needed

Hi my name is Peter I am currently seeing a neurologist about inflammation in my brain and brain stem, my last visit was Thursday 2nd August where he told me I have ms . Wondering how a diagnosis is supposed to be made and can a scan and a physical exam be definitive for a diagnosis , any advise on how this usually happens would be greatly appreciated.

Thanks peter

hi peter

i thought an mri was the vital part of an ms diagnosis.

so yes a physical exam and an mri is used for diagnosis.

often a lumbar puncture is required but this is mainly so that the neuro can tick all the boxes.

hopefully you have a follow up appointment to discuss DMDs (disease modifying drugs) and be put in contact with an ms nurse.

look after yourself.

carole x

Hi Peter,

This will tell you somewhat of the diagnostic procedure Diagnosing Multiple Sclerosis

If you do go for a spinal tap here are a few tips. The actual procedure is not painful; in fact the only thing you feel is a scratch when the anaesthetic goes in. The actual removal of fluid is just a feeling of pressure if done properly. I must stress if done properly; do not let anyone practice on you insist on someone who is experienced.

It’s after you MAY get something called ‘the headache from hell.’ To cut down the chances of getting this you should lay flat for at least 3 hours do not even get up to go to the loo; use a pan. Drink at least 2 litres of classic Coke, not diet; it’s the caffeine that aids replenishment of your CNS fluid. Being your drinking a lot take one of those bendy straws otherwise the bed will get more Coke than you. If you want a change of drink very strong coffee.

These things will drastically reduce your chances of getting a headache that could last about 8 days. If you have a couple of days off work and rest if you do not get the headache, if you do 10 days off work.

If the headache last more than 10 days you could need a blood patch; especially if there’s a wet patch on the bed in the area of the spine after a nights sleep; this is rare.

Good luck.

George

Thank you for that response i have no idea what is. Upposed to happen and couldntthink of anything to say at my appointment to the neurologist except ‘Are you sure?’. Still quite stunned now.

Once again thanks for replying

Thank you George i really hope it isnt required but if it is i will remember your advice.

Thank you again for taking the time to respond.

Peter

Hi Peter

The grounds for diagnosing MS is generally based on the McDonald Criteria: https://www.mstrust.org.uk/a-z/mcdonald-criteria

​You can see from the chart that the most important evidence is the MRI. Your history of symptoms plus the physical examination is also used by the neurologist in coming to the diagnosis.

The lumbar puncture is generally only absolutely necessary if the relapse history or the MRI evidence is insufficient to show dissemination in time and space of lesions. But as Carole said, some neurologists like to do one anyway (belt and braces type approach). George’s information about LPs is absolutely right, the caffeine and sugar in full strength Coke is what’s needed as well as laying down. Some people don’t get the headache without following this advice, and a few get the headache in spite of it.

It might help you to do some research into the diagnosis of MS. Try looking at About MS | Multiple Sclerosis Society UK

Also, in terms of disease modifying drugs (DMDs) it does help to have some idea what might be offered to you so you could have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid before you actually have the discussion with the neurologist. DMDs are taken to reduce the number and severity of relapses, they aren’t a cure for MS or even for symptoms. They are simply to lessen damage done to your nervous system by inflammatory relapses.

You aren’t likely to get a free hand in which drug you can take, it depends on how ‘active’ your MS is, what prescribing centres have been set up in your hospital, your neurologists preference and of course, your own choice once the options are whittled down to a few drugs.

All drugs do of course have not only various effectiveness in terms of average relapse reduction rates, but also the potential for side effects. So it’s a case of weighing up the risks versus the potential benefits.

Best of luck.

Sue

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Thank you for the information I still feel a bit lost but there has been more than a few helpful pages for me to read through.

Peter

Yes, Sue’s mentioned the McDonald criteria - please do look at that, it’s the MS diagnosis formula your neuro has to apply to diagnose you.

I was diagnosed with ‘likely MS’, after my spinal MRI got me referred to neurology, so yes MRI, medical history and physical exam can do it - not the anticipated trapped nerve!

A brain MRI and a course of steroids confirmed MS diagnosis and ‘likely Primary Progressive’.

Good luck

Sonia x

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Thanks Sonia , its been a few weeks since my diagnosis now and i have read quite a bit both here and online , and to be honest its a bit scary. A lot of people are literally describing my symptoms from how it started to how it progressed and for the life of me i cannot believe how my doctors and the spinal surgeons missed all the signs, it has left me very angry. im glad for this site and all the information and advice given by th people on here as im still lost as to where to start with anything from how to approach my employers to what kind of help is available both emotionally physically and financially but im working through ti one step at a time and the experiences of group members is helping me get my head round things .

thanks for the response Peter

hi peter

look at Access to Work they can provide all sorts of support in the workplace, it’s well worth looking at.

stay strong.

xx