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Continually worsening symptoms or relapse?

Hi I’ve just seen the neurologist for the first time and am waiting for MRI and nerve conduction studies. However, my symptoms are getting worse and worse by the day, since the end of May. The past dew days I’m really weak in both arms, have trouble speaking and thinking. My fatigue is worse than ever and I’m struggling to do anything. The vertigo/dizziness is getting worse too. I just wanted to see if this is how things have progressed for others? I’m hoping things will settle and start to improve. I’m terrified that if things keep getting worse at this rate, I’m going to be really struggling. Any advice would be lovely too Thanks Nell x

Hi Nell

One problem you do have is that until you are diagnosed with MS, you really can’t compare your symptoms with other peoples who definitely have MS.

In fact, even if you are diagnosed with MS, comparing your symptoms with others is almost as pointless because we do all have our differences. In particular in the way our disease has progressed. Or a different issue: in the way our disability has progressed.

It’s a nasty place to be in, to be suffering as you are and waiting for tests to (hopefully) give you some answers.

Supposing it were to be MS, you could still find that the symptoms you are experiencing could have remission. It can take many months for an MS relapse to remit. And as I understand it, in many other conditions, a pattern or relapse and remission can occur, so it’s always possible that symptoms can get better.

In addition, whatever is causing your symptoms, you could find some help in medication. And in other ways you might find you can affect your symptoms with some changes to the ways you do things.

For example, with fatigue, regardless of the cause, fatigue management should be helpful have a look at https://www.mstrust.org.uk/a-z/fatigue also https://www.mssociety.org.uk/what-is-ms/signs-and-symptoms/fatigue/treatment-and-management Obviously both of these relate to MS fatigue, but management of fatigue is relevant irrespective of causation.

Learning to manage fatigue, i.e. pacing yourself, taking regular rests, breaking tasks up, etc could make a difference to your cognitive problems too (i.e. thinking, organising your thoughts and speaking).

Also, your vertigo, dizziness problems might be helped by exercises, some of which you can do by yourself. Have a look at http://www.brainandspine.org.uk/vestibular-rehabilitation-exercises

Also, making sure you have given yourself time to rest is pretty much essential when you are feeling this rough. I do hope you find some way through this testing period. And that you have the support of family and friends.

Sue