Last reply 3 years ago
Advice

Hi all
Not diagnosed yet but after spending 10 weeks with symptoms and looking over various forums this seems the most sane and non cynical one.
Just wondered if during a relapse symptoms can come and go and change?
Started with lhermittes that got strong around mid jan, since then had hand tingling with burning feet and slight muscle pain intermittently.
Can a relapse last this long and present like this?
So far my mri’s have been normal
As you can imagine my anxiety is in overdrive as I suffer from ocd
Ps I’m a 30 year old man

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krisp
3 years ago

A lot of the symptoms are less now and not constant and the lhermittes has gone from a 9/10 to a 1/10
Would this mean it has remitted as oppose to being progressive variant?

Sorry for so many q’s, I just have suddenly been thrown into all this and I have a family I need to look after which is upsetting me the most.


stumbler
3 years ago

@krisp , so we’re the sanest and least cynical? That’s very kind of you. We try and keep sane, but occasionally, cynicism sneaks in.

Back to your question, the $64,000 question, could it be MS? Well, yes, it could be, but it could also be a variety of other conditions, starting at a simple vitamin deficiency.

MS is notoriously difficult to diagnose. It’s almost a case of eliminating the probables, then investigating the possibles.

It’s a troubling time for anyone. And, this causes anxiety and stress, which can only make the underlying problem worse. So, all you can do is work with the medical specialists and trust them to find out what’s going on for you.

It can be worthwhile to reflect on any unexplained medical problems that you’ve had in the past. Make a short list of all these symptoms, together with your present symptoms. This kind of clinical history may help the specialists.

If it’s of any comfort to you, I had my first symptoms when I was 29. They lasted for a fair few months, but I recovered. Then nothing for the next 10 years or so. If someone had told me the relevance of avoiding stress back then, I’d probably be a lot better than I am now!

So, be kind to yourself at the moment and allow the medical professionals to get to the bottom of this.

Try and practice a balanced life. Both in a healthy, balanced diet and in avoiding some of life’s extremes.

You’re more than welcome here as we do have “limbolanders”, like yourself awaiting some form of diagnosis, through to those of us who have been managing the condition for quite a time.

You ask the questions and we’ll try and answer them. 😉


krisp
3 years ago

Hi @stumbler

Thankyou so much for the answer, I really appreciate it, I’ve just tried dealing with this for 10 weeks on my own but can’t seem to get anywhere.

There’s basically been ALOT of symptoms come on over the 10 weeks, lhermittes, tingling hand, tingling feet, arm numb, nerve pain & leg pain. I know its a lot and I wonder what is anxiety.

I’ve had both Brain and c spine mri both clear. And seen the neuro twice, both times completely normal neuro exam, so I’m hoping it’s not Ms but can’t see what else it adds up to.

Also things are getting better in some areas but changing In others, it all seems very bizarre

Thanks again for the help though Its genuinely appreciated


stumbler
3 years ago

@krisp , our bodies can be quite bizarre, when they’re not being typically complex.

MRIs are just one tool in the Neuro’s toolbox. An MRI with contrast (Gadolinium enhanced) would highlight and areas of current activity.

The thing is, you shouldn’t accept an answer of “We don’t know”. You need to be assertive and ask them what the next steps are to get a diagnosis. Just be polite when you’re making these demands. If the specialist in front of you doesn’t have an answer, then ask them where they will refer you next to get an answer.

Just try not to stress on the what-ifs at this stage – it won’t help. 😉


krisp
3 years ago

@stumbler
Yes all true, thanks again, in fairness the neuro is very good he’s said his doors open anytime, but currently he can’t rule anything in or out, he thinks I may have had some sort of neuro inflammatory event but can’t say for certain without mri proof etc.
He’s pretty good in all honesty, thanks again though I’ll keep you informed


reddivine
3 years ago

10 weeks in medical professional speak is nothing. Go back to the doctors, insist on seeing a neurologist and get them to diagnose or rule out MS. It may be something else entirely.
Don’t try and do a Dr Google.
I had an MRI and CAT scan and was unwell…….after a YEAR they told me I had MS!
“We wanted to be sure…”
So hang in there..


krisp
3 years ago

Still have all these symptoms and @stumbler just wondering if this would all be classed as a cis or one event as although it’s come on over a couple of months, the symptoms have all preceded the other by less than 30 days?


stumbler
3 years ago

I wouldn’t personally like to say, @krisp , I’m not medically trained.

But, it’s not unusual for an incident of this nature to be put down to Clinically Isolated Syndrome (CIS) or one of a range of terms, like a Functional Neurological Disorder (FND).

These terms just acknowledge that something neurological is going on.

Just be patient and keep recording these events and talking to your Medical professionals.


krisp
3 years ago

@stumbler
Thanks for that, he’s pretty much said there’s been a neuro inflammatory event but doesn’t know the cause yet. I’ve been looking back at the symptoms and the first one lhermittes is nearly gone, all others were from jan/feb so in fairness not really long at all, so maybe getting ahead of myself with the progressive worries?


stumbler
3 years ago

@krisp , I’d remove a progressive variant of MS off your list of possibilities.

Both Primary and Secondary progressive are both routed down the same degenerative slope. We don’t get relapses, or remissions, we just get worse. We just try to ensure that our own personal slope isn’t too steep! 😉


krisp
3 years ago

@stumbler
Thanks again for the reply
I genuinely really do appreciate it as I have no doubt do many others on here, even those just viewing this site
My neuro dismissed the progressive type too based on age30 and the fact that it started abruptly with sensory symptoms
The only thing that worried me is the moving around and changing of symptoms and the muscle tightness but I read that can occur in up to 40% of first attacks
Thanks again for the help

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