Last reply 2 years ago
Is it MS?

Hi all
I am new to the website and am currently living in limbo. I first started to have MS symptoms 2-3 years ago. I had optic neuritis in October 2012 and got referredto an optgamoliogist.that is when she told me that it can often link to MS. Some then I have experienced tingling in both feet which worsens when I exercise, weakened bladder a 2nd bout of optic neuritis and have recently had a weak bowel which was highly embarrassing! I have had scans and a lumber puncture which have so far been clear but the neurologist said that he wouldn’t discount MS as all the symptoms match. He recently gave me steroids to try which were horrid but they have improved my vision slightly and the tingling has improved.
I just wondered if anyone can give me some advice or ideas, I aware it can take several years to diagnose as I have spoken to.people about it that have got it or know someone with it.
Thanks everyone
Angela x x

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stumbler
3 years ago

@ange1986 , welcome.

I wish it was easy to answer your question, “is it MS?”. However, if your Neurologist is unable to answer the question, we wouldn’t be better placed to make that judgement. Sorry.

As you’re now aware, MS is a notoriously difficult condition to diagnose. The symptoms that you have/are experiencing are associated with MS, but they are also associated with various other conditions too. And, therein lies the problem.

A Neurologist needs to be sure of your diagnosis before he makes it. There’s no room for guesswork.

How have things been left with your Neurologist?

I realise that you are presently in a horrible place of not knowing. But, first things first, you need some relief from these annoying symptoms. The steroids will help make things improve – they’ll be working for you some 6-8 weeks after you have the steroids.

If you haven’t been offered anything to assist with continence issues, then have a word with your GP.

But, generally, keep a diary of symptoms that you experience. This will be invaluable for your Neurologist and will help them piece together your particular jigsaw.

Also, be kind to yourself. If exercising causes you problems, then step back a notch. Consider gentler forms of exercise, e.g. swimming.

The continual worrying and stressing can only make these kind of problems worse. It actually causes the brain to release chemicals, which adversely affect your Central Nervous System (CNS) , which is what the Neurologist is trying to diagnose.

I hope this helps a little.


ange1986
3 years ago

I know no one is better to answer this than my neurologist but I just wondered if all these symptoms were associated. Thanks for replying. I had the steroids 2 weeks ago and I am noticing slight improvement so fingers crossed they will help further.the incontinence has literally just started so will see how that one goes.
The neurologist is still trying to find the diagnosis I have had several tests for other things and all come back negative so there’s not really a lot that can be done until it rears it’s ugly head further. I just wish there was an answer it’s very stressful especially with a young family and full time job I’m struggling to keep it all together.
Thank you c


stumbler
3 years ago

@ange1986 , I can well imagine how stressful it is for you all, but you have to look at the situation practically and logically. Whatever the reason for these problems, stressing about it just won’t help.

Your Neuro is going through the usual sequence of events, which may lead to a diagnosis of MS. They need to eliminate some of the probable causes, which will leave them with a further list of possible causes.

Unfortunately, these medical professionals aren’t magicians. They have to painstakingly gather together the pieces that make up your jigsaw, then they need to put it together to see the whole picture.

I’m glad the steroids are kicking in and providing some benefit. Now, you need to give your body the time and treatment it needs to get over this.

Time for the chocolate! 😉


ange1986
3 years ago

Thank you for all that it was very helpful. I just wish it had shown up on the scans!! I know in my heart it’s MS I haven’t felt right since the very 1st episode. I just hope they find it sooner rather than later so that treatment can be rake.
Xx


graham100
3 years ago

As stumbler says its so hard to call. I would just carry on as best as you can and try not to stress about it. I was diagnose optic nuritice just over 4 years ago, I can’t walk with out support now, other people 10/20 years still Mobil. So who can say. It’s a lottery. Bet I don’t win that as easy though. Lol


ange1986
3 years ago

I’m sorry to hear that. Did your MS begin with optic neuritis? Or was that further down the line?


Anonymous
3 years ago

I am also in limboland. Diagnosed with CIS after optic neuritis end of February. I have been having tingling in arms and legs and burning pain in head but MS nurse says it could still be from first episode which is so confusing. I know everyone is different but how long did it take everyone to have a second relapse and what was it?


Anonymous
3 years ago

I forgot to mention I have multiple lesions on mri and positive lumbur puncture


stumbler
3 years ago

@vonjosrob , you’ve probably seen the “writing on the wall” suggesting that MS may be on the cards for you. Well, your CIS may, or it may not, progress.

There’s some details here about CIS:-

http://www.mstrust.org.uk/downloads/cis.pdf

The MS Nurse could well be right in suggesting that these “sensory issues” are from that previous episode. But, they are still unwelcome symptoms that can be managed with medication. It may be time to discuss that angle with the MS Nurse.

There is no hard and fast rules about progression to a second relapse. Just look after yourself, avoid stress and you may be able to avoid a second relapse……


melanieellis
3 years ago

Stumbler is very wise in all he says, it would be wing for a group of unqualified people to give some form of diagnostic via a web page. My first ‘episode’ was optical neuritis and aside from some tingling I have not had any other episodes in the last 8 years but it is different for absolutely everybody! Having said that I do so have some of the chronic symptoms, that do not constitute separate episodes, such as an over-active bladder, which can happen to anyone, for which I take solifenacin succinate (brand name Vesicare). I have also experienced the joys of misbehaving bowels which just make you want to die! For this I have some liquid loperamide so I can take smaller doses than the traditional imodium. I have found that I eventually got to know my body better, it’s not failsafe but I feel like anxious now, so I now that things like long journeys such as holiday travel can bring it on. I have also been told to limit nuts, especially peanuts, but haven’t found this MB games any difference (but it might to you). If it does turn out to be MS, stay with this community as there is a wealth of kindness, caring and wisdom to be had here. X


Anonymous
3 years ago

Thankyou for your replies, I guess because of lesions and positive LP I’ve been convinced I will go on to have MS.
I will try to just put it to back of my mind as much as I can and get on with my life I guess.


Anonymous
3 years ago

Melanie have you been diagnosed and if so what we’re symptoms that led from cis to definate ms?


stumbler
3 years ago

@vonjosrob , the problem that you have to contend with is that you’ve had one episode, which doesn’t quite fit with the word “multiple” in Multiple Sclerosis.

It may be better if there was a condition called Singular Sclerosis, but there isn’t. So, we have such terms as CIS or Transverse Myelitis, signifying one episode.


ange1986
3 years ago

Thank you all for your comments.
I am now further along in the whole diagnosis process thanks to my fantastic neurologist. My lumber came back with abnormalities in the spinal fluid and the steroids improved my vision slightly so he now believes these are the signs of early N’S although it’s still not a “definite” diagnosis it is now a probable one! Feeling much more positive now that I have been referred to the MS clinic and hoping I will get more support and my questions answered there. I just hope this diagnosis is coming sooner rather than later.


Anonymous
2 years ago

Hi Ange1986 how are you now? I’ve been back at Neurologist and having another MRI in June hope you are well x


bellas1
2 years ago

I also get very anxious about travel, family gatherings etc., and it drives me nuts. I always loved travelling and socialising but now I put it off more and more because the thought of it leaves my stomach in knots and my MS flaring. I don’t understand it and long to look forward to things again. If anyone had found anything that helps with this I’d love to hear from them.

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