Advice on dx please

Everyday living
1

Hoping someone can put my mind at rest. I feel a bit daft asking.

I have been dx with RRMS. In the lead up to my dx I had many different symptoms.

  • Two previous episodes of numbness in mouth and stabbing pains in head over previous two years.
  • L’hermittes,
  • Numbness in my feet.
  • Spasticity/weakness and numbness (varied) in my knees, making straightening leg difficult in mornings or walking wobbley, which made me limp when I walked anywhere. Very poor balance when walking. I could run two miles a year ago but when it first happened I was getting over taken by pensioners, my legs just wouldn’t go as fast as I told them too, even worse on slopes…very odd.
  • Almost paralysis of right hand, unable to extend fingers which were curled up and would not move. Numbness of right arm, hand, side and spactisity in arm, which has remained.
  • Fatigue,
  • MS hug which I still get daily to some degree, wrapping round my body.
  • Complete lack of co-ordination of right arm which meant I could not write, which I think lead to my urgent MRI. I failed the touch finger nose test by missing my head!
  • Freezing sensations, tingling in right hand, arm etc.
  • Mild bladder retention.
  • Vibrartion like mobile phone implanted in stomach.
  • In clinical examination I could not do heel and toe test my back foot would not move. I had hypermetric saccades (apparently?) and brisk jaw jerk.Reflexes brisk and planters mute and clonus at each ankle (not sure if this is normal or typical of ms)

MRI scans showed a number of areas of subcortical white matter in brain plus lesion at C2/3 of spine.

However the neuro asked about previous medical history and I forgot until now about an accident I had over ten years ago where I pulled muscles badly in my right arm, which caused weakness and tingling in finger tips for a long time after. It did get better ages ago, so I forgot to mention it (I am not good at remembering bits, need to make lists).

I will not see my neuro now for a long time. Do you think given my list of symptoms they may have considered a different diagnosis? It is playing on my mind as am now recommended for DMD’s and am worrying about not mentioning it, especially as they asked about previous trauma. I am not looking to change diagnosis just worried about how important missing out something like that is. When the neuro asked if I had any thoughts what it may be I did say I had looked at MS but thought it more likely something was pressing on my spinal cord (having done google style self dx - not advisable!), which the neuro showed me nothing was before dx of ms.

Sorry it is so long. Any Thoughts?

2

Hi Anon,

I honestly don’t think an accident so long ago you forgot would have led to a different diagnosis being considered. An MS diagnosis is not one that is given lightly, and there are strict evidential criteria - to the point that some people have waited years. So I think you MUST have met the high standards of evidence required, and it’s very unlikely relating an accident years ago would have led to a different interpretation.

Pulling muscles in your arm could NOT lead to lesions in your brain or spinal cord. And even if you were to say you suffered a head or spinal injury in the accident too, I think the results of that would look very different, to an expert, and wouldn’t be mistaken for MS.

Some people first notice symptoms of MS after a traumatic incident - physical, emotional, or both. So your symptoms more than ten years ago might have been an early indication of MS, rather than a direct result of the accident. But of course, it would be natural to assume the accident was the cause, as it’s normal to think about recent injuries etc, rather than to assume we’re ill.

Depending on the circumstances, your accident might even have been partly due to early signs of MS, rather than the other way round. Obviously not if an idiot drove into you, or something like that. But if you found yourself tripping or falling, for no apparent reason, it might have been the start. Also tight muscles are very common with MS, which makes you more prone to muscle injury. So perhaps your your muscles were already too tight to begin with, and that contributed?

All in all, I wouldn’t worry about not having mentioned an ancient accident, especially as it was “just” your arm, and nothing to do with head or spine. I don’t see how it could possibly cause all your symptoms now.

I’m sorry you’ve been diagnosed with MS, but I don’t want to give you either the hope OR the fear this diagnosis is wrong. Technically, there’s no such thing as 100% certain MS diagnosis: it’s said the only way of checking for sure is after the person has died (because you’d need samples of their brain tissue). However, the standards of certainty are so high that it’s very unlikely anyone could be wrongly diagnosed just by missing out an incident from their past.

If you want absolute peace of mind, then by all means mention your concerns before starting treatment. But I’m sure you will be told your accident wasn’t the cause of all this, and it’s not a crucial missing piece of the jigsaw.

Hope this helps,

Tina

3

I’m afraid there is no doubt: as Tina has already said, your accident cannot have caused your lesions.

From what you’ve said, the only way that I can see the accident information influencing your diagnosis is the very remote possibility that it caused structural damage to your spine that has on occasion caused pressure on your spinal cord causing your mouth numbness and stabbing head pain. This is incredibly unlikely though, especially as it should have been seen on your MRI. But if it did happen this way, it might increase the chance that your recent symptoms are due to a one-off demyelinating attack (e.g. ADEM) and not MS, but this would only be a possibility if all of your symptoms started at the same time.

So, is it important to tell your neuro about the accident? Probably not, but I think you should anyway, even if it is just to put your mind at rest that he knows everything. Why not call the neuro’s secretary, ask her/him to tell the neuro about the accident and ask if this changes anything? Best to be sure, so you can be confident in the diagnosis.

In case you haven’t already been told - check out the msdecisions website re DMDs. It’s a very useful source of information.

Karen x

4

Thank you both. No, my symptoms didn’t all start at the same time. My tongue and head symptoms happened twice over past two years. My main episode that started at the beginning of the year began with ms hug for a few weeks. It almost went before over the course of a week, most other things began to get worse, starting with my co-ordination which slowly began to effect my writing until I couldn’t do it at all, followed by spasticity, then balance etc. I did specifically ask about pressure on spinal cord and neuro said it definitely wasn’t that. Unfortunately the accident was caused by some idiot driving into the passenger side of my micra with his 4x4 and I had to turn wheel hard to stop it rolling over. No other damage to me though except arm and hand, thankfully. Thank you so much for your advice, feeling more reassured now. X