Awaiting diagnosis

New diagnosis and before diagnosis
1

Hi guys

looking for some support and advice my GP and neurologist both believe I have a high chance of having MS. For the last 6-8 weeks I have had pins and needles in both my feet and hands and my right arm appears to be weaker I have struggled to hold a pen for a few minutes twice. I have also just been informed I am low in vitamin D so on medication for this. I am tired most of the time so I went for a MRI 2 weeks ago but not had my results yet. I am panicking even more now as it seems to be every other day I have a new symptoms of MS has this happened to anyone else or is it my mind playing tricks on me. I am trying to stay calm until I get my results but all day today my face is tingly and my left eye feels strained and this makes me panicked even more. My GP has not got back to me so I panicking and this last two weeks have since my MRI have been the longest ever.

I hope this makes sense to you guys just not sure if it is normal to be having different symptoms every other day I know everyone MS is different but I am so lost and don’t know where to turn.

2

Hi, everyone on here knows what you are going through and its good you found this site - everyone is so supportive and you know you are not alone.

Its easy to say but try not to panic -if it is ms, it loves stress and so symptoms get worse. keep a note of any new symptoms and when they start, then adapt and forget (or try to) do what you can when you can, dont push yourself learn to adapt and pace yourself. Any questions or just to rant and moan - this is a good place to start.

Hope you get some answers soon

1 Like
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Be aware that it can be a long time to get tests and a diagnosis. I’ve been dealing with symptoms since July last year.

4

Hi there, I just wanted to sympathise with you and to say that I have also had tingling for 8 weeks in legs, arms and face, which disappeared for a month but are now back unfortunately. However my MRI of the brain was clear and the neurologist was fairly upbeat that it wasn’t MS. I also had weakness in one arm like you - it would be heavy more in one arm than the other and I struggled to write sometimes. A really scary feeling!

I have still got to have another MRI of brain and C spine. I also have extremely low Vitamin D (severely deficient). However after being terrified for 2 months as my doctor also was pretty worried, I am now starting to think it might be other things. Or maybe I won’t ever know. I dont’ want to give you false hope - who knows possibly I am early stages MS with no lesions - but there are other possibilities for your symptoms.

As I am waiting for my MRI I am also going to have my bloods rechecked for function B12 (which they didn’t do at first). It is a little ‘shaky science’ but there is some thinking that Vitamin D, B12 and iron can depend on each other to work so a severe deficiency in one could potentially affect B12 which could be one cause of our symptoms? Or it could also be an infection?

Anyway, you are not alone. Let us know how you get on.

5

Hello N-adams90

You’ve had some great advice from your other respondents.

Putting it all together, although your GP and neurologist suspect MS, there is no way you can be expecting an MS diagnosis until after your MRI. Many people have similar symptoms to you and clear MRI scans. Equally, MS does behave differently for everyone, so just because person A has symptoms but no MS, person B could have the same symptoms and an MRI scan shows that it is MS.

But, symptoms like being unable to hold a pen for just a few minutes doesn’t sound like MS. The symptoms of MS aren’t usually over in such a short time. Mostly MS symptoms last for weeks or months, then either remit (completely or partially) or remain in the progressive type of MS (only about 15% start out with progressive MS so don’t let that worry you).

As ACT1 said, try not to get stressed, that will only make things worse, either because you do have MS and MS loves stress, or because you don’t have MS and the brain likes to play tricks on us.

Equally, new symptoms coming every other day sounds like stress is getting to you. It’s not surprising, when you are waiting for results and feeling scared as hell, your body and brain can do all kind of things to you. Try to relax about the results from your MRI. You will get the results, but sometimes it can take a little while.

If in fact you do have MS, it won’t go anywhere or change anything if the results take time. Try phoning your neurologists secretary and ask her/him when you are likely to get results. Or do you already have an appointment booked for results?

Keep in your mind that a deficiency of vitamin D can give you odd symptoms that can appear like MS, so it might be that this is the cause of your problems. I hope so. It’s something that is easily fixed.

Try to keep calm and relax about your impending results. They will come. Meanwhile, you can keep coming here and talking to us about your worries.

Sue

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Just to say Sssssue what a really good and kind reply. I know I’m not the poster but it also really helped me too. I have to say I’m so impressed by how many kind people there are on here who also know their stuff. Many of you are going through some tough times with MS and diagnosis and I really take my hat off to you, very inspirational how you are coping.