Recently Diagnosed - Concerned

New diagnosis and before diagnosis
1

Hi there

My name is Mischa [male] and 12 days ago I was diagnosed with MS.

My first symptom was numbness in my left thumb and index finger which eventually took over the whole hand and forearm. This left me not being able to use it. I had this gradually get worse over 3 weeks and was misdiagnosed twice with a pinched nerve.

Eventually I had enough and went to A&E. I had a CT scan and at first they thought I had had 2 mini strokes. This sent me into a complete panic and made my hand and arm worse. After an MRI and an MRI with dye, along with tests with a neurologist, I was diagnosed with MS. I had old lesions in brain and spine and enhancing lesions in brain and spine.

During my 3 day stay in hospital I noticed new symptoms including weird numb tingling in 2 of my fingers in my right hand, heavy knees, a numb sensation in the soles of both feet, numbness down half my torso [left side], I couldn’t feel urine coming out, and a numb bum crack [sorry].

I was given Methylprednisolone 100mg tablets, and told to take 500mg for 5 days and was then discharged. My last dose was a week today.

I have a follow up with a neurologist on the 17/9/24.

During this time I read up on MS and some symptoms slowly went away. My left hand is still numb, but I can finally grab and lift with confidence again and I also have noticed as I am writing this just how much I am using my left index finger again to type [yay].

There is an issue though, not all symptoms have gone and a couple of them seem to be getting a little worse today. The weird, numb tingling in my 2 fingers on my right hand seems worse with it now moving into the tip of another finger and the numb sensation in my soles is back. The positives still outweigh the negatives, but I am now concerned the steroids haven’t done their job and the inflammation in my brain is back and now attacking my right hand.

This is all new to me and I never expected all the symptoms to go away fully, but I’m surprised things have gotten a little worse today. I have been more stressed [brother is ill in care home] and I have been more warmer [which I know can effect symptoms].

Is it normal to get worse a week after steroids or am I reading too much into it?

Thanks, Mischa

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Steroids are good for cooling down acute activity and hurrying along the healing that would have happened anyway. In my own case, once or twice they seem to have done more than that and brought to an end what had seemed a relentless wave upon wave of relapses, but of course that might have happened anyway too. In short, they’re powerful drugs, but the main drugs you need to turn your attention to now, I think, is the disease-modifying drugs that actually ward off relapses in the future and keep you as well as you can be for as long as you can be. There’s lots about DMDs on the main part of the MS Society site, as you will doubtless have found already. I expect that is one of the things the neurologist will want to talk to you about, and it might be useful for you to have done a bit of homework yourself and had a think about it in order to get the best out of that consultation.

I’m sorry about your diagnosis. It’s always going to be an awful shock to the system, and those early days after dx are not fun, as I well remember.

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Hi Mischa, welcome to the club no-one wants to be a member of.

As your research has shown, various things can affect our symptoms and cause them to flare up from time to time; heat, stress, insufficient hydration, infections, mars ascending in venus - you name it, it seems just about everything can trigger our symptoms to get worse; anything that can aggravate an existing lesion will lead to symptoms raising their heads.

The good news is that just as being stressed/getting too hot/cold/getting a cold etc. can make symptoms flare up, being calm, getting cool/warm, avoiding infections etc. can help reduce the symptoms again. Raise the issue with your Neurologist on the 17th, in the meantime have a look into things like mindfulness meditation which a lot of people find helps, not just the MS, but all aspects of their day to day.

Some symptoms might stay with you permanently, others will come and go. If they are particularly annoying there are a lot of medications available to help. Its early days yet, but you will be able to work out what aggravates your MS the most and how best to calm it down again. Heat, Stress and Infections are my biggest triggers; if I catch a cold its guaranteed that my symptoms get way worse, soon as the cold is gone, everything goes back to normal.

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Thank you for the advice and information, it’s much appreciated.

Mischa

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