Forum

how long have i had ms

Does anyone know if a neuro will estimate how ylong you have had ms?

Most neuros won't bother because it's not important to them once you've been diagnosed.

 

If you look back over your life, you may remember weird things happening that you didn't bother going to the GP about or things that were diagnosed as something, but didn't really fit, etc. These were probably early signs of MS. (Your parents may remember things that you don't.)

 

I was diagnosed when I was 33, but my first definite episode was at 19 when my eyes went weird. It didn't last very long so I didn't bother seeing anyone about it. So, although I was diagnosed 14 years ago, I have had MS for at least 28 years.

 

Karen x

Hi Adam,

Unfortunately, no. He will be no better at estimating it than you are, based on your earliest recollection of symptoms.

There is no way of telling from scans, or other medical evidence, since it’s impossible to determine whether this evidence has been there a long time (but nobody was looking) or has materialised quite recently.

MRI scans “with contrast” can distinguish between currently active lesions and older ones, but they still can’t specify how old the older ones are. They could be a few months, or a few years!

So the best guide is still when you first noticed anything.

I think I might have had MS 20 years or more, but was only diagnosed in 2010, at the age of 44. I think I might have had symptoms stretching back into my 20s, but impossible to know for sure.

They were nothing especially frightening or dramatic, so mostly I just ignored them. But I think, now, they may have been related. Or perhaps not? It’s tempting to look for early clues, but they might have been unrelated problems a lot of people get.

Tina

Thanks Karen and Tina. If you don’t mind me asking Tina what where the earlier signs that you recall. I hope you don’t find this question invasive.

Adam my earliest signs were very painfull ankles and feet.Weakness in the legs and hips and a few ticks n twitches.

I would agree with the girls,you could proberly estimate when you may of had your first signs but at the time you didnt even think they could be due to MS...

Charlie,x

Yeah I had feelings in my legs about 5 months ago and went to GP but have been getting swollen ankles for quite some time. I just seem to be weaker than I used to be.

Adam babe if the neuro diagnoses you with MS and you personaly noticed signs 5 months ago then maybe thats your time frame.It is hard to make a guess on when our symptoms started as often enough we do not have all the symptoms of MS at first,it may start with a few pains and twitches and we maybe think ohh thats bad cramp when infact it can possibly be the start of MS.

I think many of us can only guess when things started to go wrong.

But please note you are not alone with this,we are here to listen and help you when we can.

Charlie,x

In 1980 I clearly had MS symptoms although at the time i was told it was smoking 5 cigs a day. My symptoms were waking up with a DEAD left arm, which took ages to come back to life again after waking up. I also had pins and needles in this arm during the day too. When i saw my GP at the time, he just said oh its one of those things do you smoke? I said well yes but i only smoke about 5 a day if that....well I suggest you stop smoking and the pins and needles will go away. I stopped smoking and the pins and needles took another 6 months to disappear.

in 1982 I came back from Kenya and experienced myalgia in my legs, pins and needles in my legs and severe fatigued. I was told it was either brucellosis or an unknown virus....my brucella test was negative. It took about another 6 months to get back to near to normal but from that day to 1999 when i went blind twice, I had odd things ... UTI constant, odd fatigue and nerve pains and stuff but not so bad it ever bothered me.

When i asked the second opinion neurologist if in 1980 this could have been my first MS attack (mild), he said no way because I would now be in a full time wheelchair and every MRI would show large MS lesions........

Having actual lesions on my spine were totally ignored as not MS...but they gave me no idea why they were there, and having optical neuritis proven by a VEP test did not point me to MS, even though i had gone blind twice in 1999 and had classic ON symptoms which was ignored anyway by my GP.

I believe you can have MS show up from childhood, and it goes into a hibernation....

On autopsy there have been people who had a good age over 80 have found to have had MS but the person had NO SYMPTOMS complained about...so it can be there and give no problems...even with proven MS lesions and spinal cord damage on autopsy. There are quite a few cases actually of people who have lived with MS all their lives and not known about it.

I personally think that the neurologists especially in this country need to read up a bit more about the effects MS can have on different people. Small lesions can cause devistation to some, where large lesions can just be a mild irritant.

So the answer to your question is...how long is a piece of string lol.

 

 

 

 

 

 

 

Hi adam

I told the Neuro after my dx that I did have an incident as long ago as 23 years, it was a numb hand which meant I couldn’t do the buttons up on my blouse. I mistook this for arthritis as mum had this very bad; so I stopped eating red meat and finally stopped eating meat altogether, apart from balance problems now and again I went on for another 10 years before I had an attack which left me with bowel incontinence for around a year.

I was surprised to find that these details are in my notes and are taken as MS attacks even though I didn’t always see a doctor as these symptoms went away fairly quickly. So I would say yes, the Neuro will estimate from the information you give.

Wendyxx

Hi Adam

They might estimate the length of time you have had MS as suggested above but will be more concerned about securing evidence to confirm a diagnosis and then looking at treatments, if any.  In my case my MS was originally thought to be PPMS but, when I saw the consultant in November 2011 to confirm the diagnosis, he looked at my history and decided I have Secondary Progressive. In  1990 I had an episode of numbness in both legs and up to my waist which lasted less than a week then disappeared completely and I had no further symptoms for 16 years. The GP diagnosed it as a trapped nerve at the time but in retrospect the neuro thinks it was probably a partial acute transverse myelitis i.e. an inflammation.  I had no other episodes or symptoms as far as I can remember before 1990 and nothing afterwards until around 2005 and then several years of fleeting, strange symptoms and a number of red herrings before  I was referred to Neurology in 2010. It then took 8 months for a probable diagnosis and another 5 for the consultant to confirm.  If it is important to you to understand precisely when it started then make sure you have all the facts to hand, including medical records from your GP and then ask him or her to make an estimate.

Hilary x

Tics and twitches are MS symptoms? Gah! I have Tourette’s syndrome! …How confusing.

midnightmoon,these are diffrent types of ticks n twitches and they can be pritty painfull.

I have slight tourettes to were I say some nasty things,not good but I can laugh at myself.....

Twitches can happen in MS. They are different to tics though and are basically a type of spasm. They can range from fairly mild, small movements to large, arms/legs being flung around quite violently, large movements and from no pain to severe pain.

Karen x

Cheers all. The consultant at the eye clinic was the one who told me I had ms. The radiographer report also said ms and my gp has it on his records. I am still waiting for neuro. I went to the zoo with my family yesterday, I was fibe to start off with but after about 2 or 3 hours I felt so fatigued, it was like I was struggling to take another step. I felt so annoyed even though I know I can’t help it. Writing this I feel a little marsh because there are people here that wish they could walk round for 3 hours so I apologise to you.