Confused and stressed. How long has anyone else gone through testing for MS with no diagnosis?

Hi, Thanks for taking the time to read my post, I have always read forums but never posted, but I am getting to the point where I need advice from other people that may have been through the same kind of thing. So, it started in Feb 2013 when my face went numb and after a week it had completely travelled all over my body and down to my toes, I didn’t feel any pain from pin pricks and it felt like it wasn’t my own skin. A couple of weeks after the symptoms started to come in waves; *Tingling (like pins and needles without the stabbing feeling, almost like vibrations) in my arms and legs. * Extreme tiredness (but only lasted about 2 weeks) * Shooting pains like electricity (mainly in my right shoulder down to my elbow but also in legs and back) * Very bad pains in muscles (mostly in my arms and legs but also other places I never knew I had muscles). Doc prescribed many different types of drugs but only tramadol would give me any relief. * Tight muscles mainly in legs, that sometimes leads to awful cramping. For about 2months I found it difficult to walk and had to sit a lot (never ever had problems with my legs before, I used to dance, go to the gym and had jobs where I was on my feet for the majority of the day). I’m Only 28 and wouldn’t expect to have problems like this at my age :confused: I went through 6 months of testing and Neuro appointments. All of my tests came back negative, they could not find anything. I had an MRI of my brain and cervical spine, evoked potentials, many bloods taken and a lumbar puncture. My symptoms stopped around July 2013 (5 months after the first symptom). In Jan this year the symptoms started again but a little different this time; * Pain only in legs (although I did have extreme pain around my rib age and chest on the left side of my body for about 6 hours one day) * Tingling only in my legs this time * Stumbling all the time. My balance has always been great, especially as I danced - mainly ballet. Always have bruises on my legs an arms * Extreme tiredness, again only for a few weeks I have been back to my Neuro and this time he suggested that I didn’t go through all the tests again, just an MRI. He is going to scan my Full spine this time (think he said Thoracic). He said if that comes back negative that he would leave it there and arrange a follow up in 6 months, but if my symptoms were to change then I had to come back earlier (or if it stopped and started again). I’m really confused and don’t know what to think. I sometimes question myself and wonder if I’m going crazy!! My Doc advised that he strongly suspects MS and that is why he referred me to the Neuro. However my Neuro won’t tie anything down or even make a suggestion. I really don’t know what to think. Has anyone else experienced the same symptoms? Is anyone else undergoing tests and waiting for some kind of diagnosis? Has anyone had these symptoms and received a diagnosis? If so how long did it take for the diagnosis? So sorry it’s really long, like a life story :slight_smile: Thanks again for taking the time to read this Claire x

Also I forgot to add that I have had bladder and bowel problems that come and go. Im usually quite regular but for weeks at a time I go numerous times per day (triple the amount of times I normally go), and when I have to go… I have to go immediately. Has anyone else has this amount of symptoms, and did you get any answers from the Docs/Neuro? Thanks :slight_smile:

Hello Claire and welcome

You do seem to be have neuro type symptoms but there are many neurological conditions. It can take a long time and many tests, to get a diagnosis of any kind.

Wait and see what the results of the spinal MRI show and then discuss with neuro where to go next. It must be really frustrating and worrying for you to have all these symptoms and no diagnosis.

Are you getting practical help of any kind with your problems…such as the bowel/bladder issues? you can ask your GP, for a referral to the Continence nurse. I hope you have close family/friend you can confide in…its good to vent.

Take care xx

In Jan 2012 after being admitted for suspected Mini stroke the doctors on the ward tryed to convince me it was MS and I would not beleive, saw one consultant as they referred me and he said it was Migraine’s I visited another one later in the year and he said it was MS symptoms but all tests said all clear. Was just left confused now with no diagnosis of MS

I have had a history of symptoms going back as far as five years ago. Currently into month 9 of having neuro tests which have included MRI of neck and spine (which both show lesions), a neurological assesment and a lumbar puncture in which I am awaiting the results.

Grab a seat, I think we could be here a while…zzzzzzzzzzzzzzzzzzzzz

I am too being investigated and my symptoms started 3/4 years ago. Having said that, a big gap in between this time and last bout. My symptoms reignited the investigation back in December last year so only 4 months later but still waiting for my MRI - perhaps we need to prepare ourselves for a long period of Limbo. My biggest worry is that by the time I get my MRI will it all have healed? Here’s to being a patient patient! Leah :slight_smile:


I was diagnosed in April 2011 and just just recently started meds (Jan 2014). Although I haven’t had any relapses that have affected me physically other than a bout of double vision which lasted several weeks in December 2010, I have had several MRI scans and a Lumbar puncture. The Lumbar came back inconclusive although it was cloudy and should be clear (this does not confirm MS however). This in addition to an MRI, which showed brain lesions gave me my diagnosis. As I was not having any relapses, I was having another MRI a year later, which showed more lesions than previously. Following a further MRI (including one on my spine this time) again showed more lesions. This has now led me to start on meds.

A friend is struggling also with a diagnosis (she believes could be fibromyalgia and not MS). I cannot believe that she has not had any MRI’s as, following a conversation with my consultant, these lesions can pinpoint a diagnosis to MS.

I have also been advised that some people with MS can have several lesions but almost no symptons whereas others can only have a couple but can suffer quite abit with symptons.

Not sure if this will help in anyway but good luck.

Hi, ive been on this site before and have just returned. I had much the same symptoms and have been left with a weakness in my right hand and a pinky that flares out which I cant pull in towards my other fingers. I had a negative MRI and kind of didnt think about it again until I was at the doctors today for something unrelated and we had a chat about it. She read the neuro letter which I hadnt read and it said unable to reach a diagnosis at this point but may manefest itself later and only then will a diagnose be reached. GP said I could still have early MS and to be watchful of any funny little things happening ( her words lol ). she said its often the case until something else happens we dont know fully and if it does ill need another MRI.

She said it can take years and years sometimes to reach that point.

Hi Claire,

Very much a case of how long is a piece of string. I am still waiting and first visited my GP in 1987. With constant fob offs and surgery for carpal tunnel, diagnosis of arthritis (no x-rays, scans or anything) various infections etc I am now a little further down the line having changed GPs. O.K so some of the delay was down to me being in despair and just getting on with life and bringing up my children and ignoring the bad bits and not wanting to always be at the doctor’s surgery. I spent a fortune on the chiropractor who eventually always seemed to get me back on track, or did he, was it just that the relapse had burned itself out. Who knows. I have all but given up with the NHS getting to the bottom of it so I have scrimped and saved enough for a private consultation and have just picked up my referral letter. My GP is so apologetic about the way the hospital have handled things and offered to refer me elsewhere but I feel I cannot wait for further x amount of weeks for another referral. I am just hoping that the consultant I see privately can then see me in his NHS clinic if necessary. Sorry this is probably not what you want to hear and I know others have had a first class service from the NHS but I am just putting forward my experiences for what it is worth. Hope you get to the bottom of your symptoms quickly.

Hi Claire don’t give up I was almost at the point of never going back to the hospital after been told I was making it up!!! I’m pleased my mam convinced me otherwise I was diagnosed in January of this year with mild relapse and remittance ms after three years of test. I stated my medication 6 weeks ago and all is going well only had one bad reaction and that was due to me already having a cold at the time! Be pushy and if you’ve not already had a MRI scan push for one it is hard to diagnose I know but your symptoms are very similar to what I experience. But stay positive and make sure you have good family and friends around you to listen to you. I like to talk about it it helps me and life shouldn’t change that much mine hasn’t other than I look at life very differently now and take every opportunity give to me and just enjoy myself that’s the important thing after all. Good luck and stay positive :slight_smile:

Yip, am also in limbo land with getting a Diagnosis. From approximately 2010 I’ve had the same symptoms on and off with some periods being worse than others.

Just last year I was given the all clear from Parkinson’s and also the all clear from having Stroke.

As most, it’s the unknown I don’t like. I just wish now for answer’s, been a long 4yrs, probably with more to come.

Take care.

Honestly from my first signal of Neuro/Serious issues 18 years. From major symptoms, 4 years.

Had everything from:- Meningitis (Hospitalised), Glandular Fever (Hospitalised), Depression, Mental Health Issues, Idopathic Intercranial Hypertension (Hospitalised), Migrains, Lupus, B12 deficiency/Pernicious Anaemia.

In the last 5 months it’s leaning to MS, symptoms have never ever changed just worsened… As they worsen, it seems easier to identify. I now have high ANA readings and positive O-bands in my CSF alongside lesions in the brain and spine.

Am I frustrated that I went through all of those steps? A little, the ease of pointing at mental health when there is a clear physical signs, but it’s the game I guess… I can’t feel my legs = depression?

I think that I am lucky that compared to some people my syptoms are not physically diabling, although limitng. I just want to understand it more and treat it, to be as in control of my own life as possible… My first run of steroids seem to be making a small difference early on, so I am hopeful.

I know it’s frustrating for you, I think in MS and Neuro conditions we feel things quicker than they show themselves, it takes time for the damage to appear to the levels that the tests can show. I hope you find some answers and some comfort, maybe keep a diary of your symptoms and severity scale and triggers, to be specific when you visit the Neuro?

I have been experiencing random symtpoms, balance issues, fatigue (the list goes on, but I won’t bore you with it!!) for about 30 years! I have been fobbed off more times than I care to remember, and am still no further forward now! Over the years I have been seen by ENT, Rheumatology, Neurology, ME/CFS Specalist and have had physiotherapy, hydrotherapy, hypnotherapy, seen various chiropractors and osteopaths, and had a few x-rays etc along the way.

My symptoms have increased dramatically over the past 18 months, and I am now being investigated for MS, amongst other things. This most recent wave of activity started in November 2012 with suspected Labyrinthitis. It took my GP until April 2013 to agree to refer me to ENT who sent me for a brain MRI which showed multiple lesions, but these are, apparetly, ‘non-specific’. I saw one Neuro who investigated me for heart/stroke issues in order to rule out the lesions being caused by mini-strokes etc…all these tests came back normal. He then referred me to another Neuro who specialises in MS, who sent me for a neck/spine MRI, EPs and LP. He also referred me for tests to see if my balance issues are being caused by a problem with my inner ear, which were negative. I am due to see this Neuro again at the beginning of May for the results of all these tests.

I think my story is particularly complicated and drawn out, and probably not typical…but it does show how things can be drawn out for such a long time without any firm diagnosis. (Oh, actually, I have had diagnoses of ME/CFS and, more recently, Fibromyalgia, along the way, but these seem to have now been dismissed by the Neuro, and with which I have never really agreed anyway).

Good luck to everyone still on that journey to some answers. Thank goodness for forums such as this one!