can anyone help with their opinions please?

New diagnosis and before diagnosis
1

Hi,

I’m brand new here after being diagnosed with MS last night and was hoping for your opinions on my case. I had Bells Palsy in January this year which i recovered from perfectly after the prescribed medication. In about March time I started to notice a numb feeling in both of my forearms which is more or less there constantly now. I also have a strange sensation on the right side of my head like creatures running through my hair but that comes and goes. I went to see my GP as was concerned it was neurological after the Bells Palsy issue and he mentioned MS. Had a series of blood tests which were all fime and he then referred me to the same consultant I saw about the Bells as have private healthcare through work.

I saw him and he said he was sure it wasn’t MS and my GP shouldn’t have told me that but wanted to send me for a MRI scan of my brain and C-Spine, which showed inflammation of my nervous system and that my spine was in the wrong place. This prompted another load of blood tests and another MRI scan of my Thoracic Spine.

I went last night for the results and was told I have a Aracnoid Web next to my spine which is pushing it into the wrong position but a lot of people have these and they are a-symptomatic and rarely diagnosed as only picked up on MRI scans when they are looking for something else. He seemed quite focussed on this for the first part of the appointment and after asking me questions about head injuries (none) and pricking me with a pin all over (sensation fine) he dismissed it as a red herring.

I then asked about the blood tests and what the inflammation of the nervous system indicated and he said as all the blood tests are clear, it means I have MS! Just so matter of fact.

I don’t have any other symptoms - apart from tiredness, but I have 3 children and work full time so who doesn’t feel tired!? I just feel like it’s such a strange way to diagnose it. Because it isn’t anything else it must be MS?

I’ve pretty much spent last night and today either in denial thinking this can’t be right, or crying at the prospect that my life is potentially going to change so dramatically. I don’t know anything about the condition and feel totally in limbo.

He’s prescribed some steroids to try and ease the symptoms in my arms and said to go back and see him in 2 weeks and that’s it?!

Am I being stupid and in denial whereas really I should just be accepting it, or do I need to push for more evidence to confirm the diagnosis?

Sorry for the essay but so much going through my head right now.

Thank you for taking the time to read it xx

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Sorry to hear your news:-( did he give you a definite dx? If so or not you can always phone to MS helpline who are really good and good at listening. You can always ask questions on here, but I always find that am a bit reluctant to reply with any advise, as I’m not medically trained and have only been dx for a year. You could also ring your neuro secretary and ask if they have a contact number for the MS nurse who are also really good. Good luck with everything. Take care of yourself.

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Hi Billpat1 and thank you for replying. He literally blurted out “it means you’ve got MS”. He referred me to this website and prescribed a course of steroids and suggested vitamin D tablets. I called the MS Society helpline and spoke to a lovely man who said I shouldnt be taking supplements if a Vit D deficiency hasnt been confirmed abd he gave me the MS Nurse’s number. She has called me today but I missed her as was at work…although cant concentrate and keep crying as so in shock about the whole thing. Going to speak to her on Monday and hope she can advise me. I have an appointment to go back in 2 weeks to see him and have so many questions but also want to insist on lumbar puncture and evoked potentials testing. What tests did you have that led to your diagnosis?

1 Like
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You poor thing - that neuro fluffed up his bedside manner that day. No wonder you are left feeling a combination of confused and upset. I can only guess from what you say in your post, but this is what it sounds like to me:

It sounds to me like they found lesions on your brain/spine during that first MRI. this is likely what they meant by inflammation in your nervous system. It sounds like the inflammation may have been characteristic for MS. This means the lesions (these are scars left after periods of inflammation) were probably in the areas they would expect to see in MS and are of the correct type for MS. You don’t say whether you had contrast - this would be given as an injection partway through the MRI procedure. If you did this may ahve given them further evidence for MS.

This left them then with the question - we think is MS, but can we be sure? There are other things that can cause similar inflammation, such as lupus, so the blood tests will in all likelihood have been to find out if the markers for these other diseases are present. Since these have been ruled out it leaves MS as the cause of the inflammation. There is no blood test for MS, so the standard would be using clinical symptoms, MRI evidence, and ruling out mimics by blood tests or other means. Lumbar puncture and VEP are additional tests which are used when they have doubt over the MRI evidence, or when they need to show there has been more than one area affected if the MRI doesn’t show it. So it may not be needed.

I understand it is a big shock and you want the lumbar and VEP to rule out MS, but unfortunately neither test is used that way - both are used to give additional evidence FOR MS if they are positive, but not the other way round - this is because having a negative of either doesn’t rule it out (its a bit like a pregnancy test, you wont get a positive if you are not pregnant, but you may get a negative result if you are pregnant if perhaps it’s too early for instance).

Have you spoken to your GP practice? Sometimes an appointment with a GP to interpret the consultants words makes all the difference to understanding, the MS nurse may be able to do this too.

Either way, I am sorry you are having such a tough time, and hope you can get some answers soon. Being told something like this is devastating for anyone, particularly when done in such a rubbish way. So please allow yourself some time to adapt - be good to yourself, and remember if this is MS, then you have already had it for a while, so now you know you have it, and you can learn about your enemy and fight it. As you read more about the people here with MS - for most of them life is still good, and they still enjoy it.

Another good source of information is MSTrust.orguk

Leah :slight_smile:

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Leah thank you so much for your reply and for making it all make much more sense. I wish I was given that explanation by him on Wed night and I wouod have understood much more. I am speaking to the MS Nurse next week and my GP on Tuesday then back to neurologist a week on Wed. You have helped massively, thank you xx

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You are welcome Aimee - just remember it is guesswork though! The ms nurse and GP should be able to help a bit more x

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I know but you make a lot of sense :slight_smile: thanks again!