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Diagnosis... Delayed??

Hi All… hoping to get some clarity on my diagnosis as the NHS have been sending me letters with results with absolutely no context. So wild speculation is going on in my head trying to interpret everything.

1)So IV had MRI and there is some lesions on my brain and also spinal cord
2) I have had my CSF analysed and there is IGG in my CSF and plasma but some Unique bands in in the CSF.

I have been prescribed steroids without any real guidance… just the receptionist saying here is your prescription!

I have some mobility issues in both my legs (no feeling) and also digestive problems (no appetite and constipation). From what I read about MS it usually hits one side but this is most definitely both sides and I have no issues with cognition or vision. These all have rapidly progressed over 3 months

From the results I’m thinkig MS… But could this be viral CNS infection? IV got an appointment with neurologist in 3 weeks…
But my mind is racing trying to figure out the diagnosis!

Thanks community :slight_smile:

Hello

Welcome to the forum UKDad.

It’s unbelievable the way people so often get correspondence in total tech-speak without any translation.

You’ve not said, but I’m wondering if the lesions in your brain and spine have been described as ‘demyelinating’. MS lesions are demylinating, ie they are caused when inflammation in your central nervous system attacks the myelin. Myelin is the substance that normally protects the nerves so when it’s attacked neurological symptoms appear.

IgG is immunoglobulin. I’m not certain what relation the levels of IgG have to the diagnosis of MS.

When you say ‘unique bands in CSF’, do your letters say these are Gadolinium bands? If so, that does have implications for MS, many people with MS have gadolinium bands present in their spinal fluid, but not in their blood serum. So unique bands in your CSF would be part of an MS diagnosis, although not everyone has unmatched bands and equally on their own, they don’t prove MS.

Certainly the treatment for an MS relapse is usually high dose steroids. The aim is to stop the inflammation in the nervous system and so bring the relapse to an early end. The steroids are unreliable, they don’t always work, but when taken early enough they stand a good chance of working.

You’ve said MS usually hits one side, I don’t believe thats necessarily true. MS is a strange disease, it affects each of us differently. So it’s impossible to state categorically that MS does X or doesn’t do Y.

None of these factors in isolation are definitive proof of MS. In fact it’s possible that even in combination they don’t prove MS. It is a matter of waiting to see what the neurologist has to say.

Obviously, I am not an expert. I’m just someone who’s had MS for quite a long time.

I hope some of this amateur information helps. Of course, we often say not to Google MS, symptoms or diagnosis; we should also say that trusting a random stranger on this forum is equally unreliable. So treat what I’ve written with utmost scepticism. If you need to look up specific terms, diagnosis or symptoms, try looking at the MS Trust or indeed, the MS Society.

Best of luck, let us know what happens. And of course, if you end help, just continue posting on here.

Sue

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Thanks sue for your message!

I didn’t get any injection before the CSF and there is no mention of that Gadolinium bands… just… Bands!

It also said in my MRI letter evidence of demyelination and dissemination in space… so… I’m thinking MS is likely which is scary!

I wish the Drs talked to me rather than just sending me emails and letting my mind wander trying to process information I’m not qualified to process!

Thanks again! Xxx

Hello Dad (!)

Now, my next message to you will be scary.

Dissemination in space and time is what has to be shown before a diagnosis of MS is made.

Space = more than one demyelinating lesion.
Time = more than one relapse or oligoclonal bands in the CFS but not in blood plasma.

Or continued progression for one year plus lesions and /or O bands. Which indicates progressive MS. You cannot at this point be diagnosed with PPMS because your symptoms haven’t been that long-standing (I think) at least not that the neurologist has seen.

So, notwithstanding my last point to you on the previous post with regard to the fact that you cannot rely on someone (like me), unqualified and who doesn’t know you, I expect that you’ll be diagnosed with MS at your appointment.

The grounds for which I’ve said all of the above come from here: McDonald criteria | MS Trust The McDonald Criteria must be followed in order to diagnose MS. I think your neurologist having used the term ‘dissemination in space’ as well as your test results and the word ‘demyelinating’ with regard to lesions show that they’ve followed this.

But. As I said, it’s not likely at least at the start for someone to be diagnosed with PPMS. So the neurologist is likely to diagnose relapsing remitting MS. The good news about that (believe me, there is some) is that there are loads of what are called Disease Modifying Drugs. These are developed to reduce number and severity of relapses. Some are brilliant. You might find that you get going on a good drug and you have no more MS relapses.

Once you get past the fear and worry the next few weeks / months are likely to bring, you’ll discover that it’s possible to lead a good and productive life with MS.

We, the members of this forum, will be here to listen to your worries and understand your fears.

Sue

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Hi Sue!

I have been diagnosed with MS… but it is unknown at this time if it’s RRMS or PPMS like you said! The steroids have helped me a bit, legs feel stronger and I’m hungry again!

Thanks for your support!