Intermittent symptoms - Does that mean I shouldn't be worried

[JaneE]

In January 2023 I had about 4 weeks of 'strange' symptoms - including numbness, pain, buzzing in my arms, spasticity in my legs and toes, dizziness, blurred and double vision, insomnia, memory issues and headaches. All of these symptoms were intermittent - would last a couple of hours and then go away, and sometimes come back in a few days and sometimes not.

 

This was followed by 18 months of fatigue - 60% what I'd define as really run down and tired feeling, but 20% genuinely so tired I couldn't do even the most basic things.

 

I had a neurology consult in August 2023 where they told me not to worry about anything because the symptoms - except for the fatigue which was only at run down levels then - had gone away.

 

I've now this June had another 3 week episode of what feels the same to me. The same types of symptoms - but intermittent again.. And the really bad tiredness is back with a vengeance.

 

Went back to the GP they they seem to think that I shouldn't worry because all of this is intermittent. Basically said that if it was something serious like cancer the issues would be there all the time and she said that these could all be psychological or brought on by stress. I think she's also placing a lot on the fact that the neurologist said there was nothing wrong with me - but the neurologist saw me for literally 10 minutes and the only diagnostic she did with me was to make me push on her thumbs.

 

I'm worried about MS - it feels to me like I've had two distinct episodes, within 18 months of each other, and characterise by vision, cognitive issues and fatigue, so I'm considering getting a private neurology consult. But also I know that I have struggled with mental health for my entire life, so if the fact that I experience only temporary eg numbness really does mean that this isn't likely to be MS I don't want to waste my time or money (or be made to feel crazy by another HCP which is never fun!)

 

I'd love to know if when people who know they have MS have an episode what the duration of their symptoms are - both how long the episode is and how long an individual symptom would last - it would help me make a call one way or the other.

 

Thank you!

E.

 

 

[Stumbler]

I wish I could provide you with a black or white answer, @JaneE  but this is MS that we're talking about! This means that there are numerous shades of grey, with a similar colour for the causal factor(s)!

 

An MS relapse or MS symptoms, both transient and permanent, can have a variety of causes. I could waffle on about this subject for ages but thought best to provide a link to detailed information for you :-

 

MS Trust

 

It is in your interest to try and identify any possible cause(s)  so that these can be avoided. This could involve a detailed diary so that you have an "audit trail" for any future symptoms.

 

Obviously permanent symptoms are a lot more unwelcome than those of a transient nature. 

 

As to the length of people's episodes/symptoms, now that's a question of how long is this greyish piece of string?!

 

I do hope that you don't feel that my response so far has been flippant or sarcastic, as that is not my  intention. I just want to emphasise that the MS world is littered with unknowns and not knowns.

 

Should you go private for another opinion? Personally, I wouldn't. They would only tell you in 30 minutes or more what you have been told in 10 minutes previously. I'm sure there are better ways to spend your hard-earned cash. For quick answers to specific questions, contact your MS Nurse.

 

The often mentioned strategy for symptom management that you are looking for is "Eliminate the probables, then investigate the possibles" 

 

Just take care of yourself, avoiding stressful situations (my pet agitator).

 

[JaneE]

I guess it makes sense that people struggle so much to get a diagnosis is because its so varied and so unclear - even to HCPs.

 

I already think i know that a viral infection of some kind is what sets me off - had covid before the first bout and some kind of flu before the second - but avoiding that kind of thing is easier said than done.

 

But focussing on preventing it from happening again is a good outlook and makes me feel less helpless, so thank you.

 

 

 

 

[Stumbler]

@JaneE , MS is a most frustrating condition but we shouldn't allow it define us.

 

Yes, the identification and avoidance of "triggers" is an important aspect of our management strategy.

 

This in turn allows us to adopt a "can do" philosophy.

 

Good luck and take care, Jane.

 

[Happymama]

My episodes - really called relapses, started in April 2009 with buzzing, bubbling under my feet, and a whole lot of other symptoms.  Spring 2010 was the next, Half my face lit up with electric shocks and tugging.  More buzzing in my thigh, odd stuff, tingling and my right ankle going numb.

 

Now it's settled down to regular 8 week relapses, although recently it's more a constant grumble which peaks every so often for a week or too then subsides. I'm not diagnosed, my neurologist says I'm not bad enough even though when your right shin vanishes you can't walk which is pretty damn bad to me!  The 8 week relapses is an average for MS, apparently.  Some last 9 and the odd one 7.  Oh and the right leg numbness is now above the knee (took a few years) , next stop is mid thigh I should think ...