still undiagnosed after 30 yrs

I started having weird and “wonderful” symptoms over 30 years ago and after over 6 years of tests - delayed by the fact that they initially suspected back problems, I received the news that I have inflammation of the CNS.

My neurologist told me that due to tightening of government guidelines in diagnosis of ms, that he could only give me the diagnosis of inflammation of the CNS and after a couple of checkups, I was discharged, with the advice that a part time job might take my mind off the symptoms.

With the help of my gp’s and painkillers (buprenorphine), I’ve managed to hold down a part time job and with support, a full time job for the past 15 years. My dilemma is that I’ve only been able to be this active with the support of my lifetime DLA motobility award, now that we’re all to be reassessed and given the convictions of the current government to clamp down on benefits, as I haven’t a formal diagnosis of having rrms, how will I fare.

My symptoms are still there and in fact, pain is the biggest factor now, so can’t afford to over exert myself and suffer with aching limbs quite badly.

Any advice as to whether I should chase for a diagnosis. Sorry for the long rant.

I don’t know about DLA, but with the WCA (Work Capability Assessment) an actual diagnosis doesn’t seem to make much difference. It’s all about how your symptoms limit your ability to do everyday things, and as you probably know, each person with MS experiences the condition differently. A diagnosis of RRMS, in itself, doesn’t tell you anything about the extent of disability. But a letter from a neurologist, or GP, or both, should carry some weight, especially if you have to go to appeal. Also, maybe something in writing from your employer might be helpful.


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Hi hun have you been back to neurologist for new assessments? I feel for you honestly, it took me ages to get diagnosed I have MS on the table but like they say to me at 63 its too late to do anything about it lol, and it isnt LIFE THREATENING, oh yeh i got told that several times…should have recorded it lol.

When i originally got my DLA I was undiagnosed. I saw a DLA doctor at home, she was amazing. She even told me you have MS i would stake my job on it, and she said you have pale something in my eye which would prove i had optical neuritis … she was right too as a year later finally after VEP tests it proved i had ON in both eyes lol…I went blind in 2000 on holiday but no one cared about that as it only lasted for a few minutes TWICE, my GP at the time never even checked my eyes just said it was probably low blood pressure or the heat, and that is the truth…ah well never mind that was then…

The DLA doctor was amazing like i said and i was awarded my DLA without diagnosis indefinatly…usually you only get it for afew years then have to reapply.

Anywoo, where do you live? There is a post code thing you can do on the PIP gov page and it tells you when you can expect to be reassessed…in my area its not until late 2015/2016 and i will be 65 then…

Getting PIP is not relaiant on a diagnosis…it does go by your ability to walk etc and care for yourself.

I think your amazing to have coped with it all so well, fair play. We are alike as I am convinced mine started in 1981 but when i asked one neuro about that he said well i dont expect so i would expect you to be really disabled by now lol…even he did not know how MS can affect people, as I have friends who were diagnosed in the late SEVENTIES and can do more then me…

I believe the reason why it took me so long to get a diagnosis was my age as on my very first MRI of the head I PAID FOR myself it said…

There is a large area of high signal foci in the deep white matter of the brain…

Radiologist report. Although this could be due to a demylinating event, I would think it would be highly more likely it is because of the patients age…

I kid you not. This was taken in 2006 I was born in 1951…age at the time…55…

THREE months later I had some kind of memory seizure and lost my memory for over 8 hours…they called it transient global amnesia at the time. I have had several since, and since the first one i have read that you can have seizures with MS…

I am now being taken seriously as having Transient Epileptic Amnesia which is rarer then hens teeth lol and undergoing lots of tests…so from small acorn and foci…large oak trees grow ha ha.

I love the UK medical process…NOT lol…I am too old to have MS i was told that…but begrudgingly with positive VEPS, LESIONS on spine and a few other odd things i have been told MS…lol…even at 63 woo hoo.

Sorry i do tend to ramble. If you havent been back for a reassessment perhaps it might be time to see the neuro again, as lesions are like magic, now you see them now you dont lol.

Hugs, mad Maria. xxx

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I first saw a neurologist in 1990 when I had l’hermittes. I had just finished radiation therapy for hodgkins lymphoma. After clear MRI and lumbar puncture I was told that I was suffering from temporary inflammation of the nervous system as a result of the treatment. I was 25 then. Symptoms settled until 2005 when I had a numb area on my left arm. It only lasted 3 months and another MRI was clear so I was sent on my merry way. Then in 2008 I had an attack on more numbness, fatigue and other odd sensations and was told that it was a virus. I did bounce back after 6 weeks or so to 90%. Then a year later started to trip over my right foot. This got worse and worse so I saw neuro in 2011 who said after an MRI showed a lesion on my cervical cord that I had degeneration in the area were the inflammation had been in 1990.

I saw another neuro in 2012 who disagreed with the first neuro and said he suspected that I had MS since that first attack in 1990. The MS he said had followed a benign course and has now entered the SPMS stage. I did point out that my MRI in 2005 was completely clear so if MS had been present for 15 years would something not have showed. He shrugged and said “you are an unusual case”. I was sent for more MRIs (no change) and a LP. The LP was negative but he said he wanted to repeat it as “sometimes in the early stages of MS the LP can be clear”. My answer was “how could this be early stages if as you say I have had it since 1990 - over 20 years!” He looked a bit perplexed at this.

Anyway so I have not diagnosis yet. My only real complaint is that I walk awkwardly, slowly with a spastic drop foot gait. I have not been able to get even a blue badge as my GP says “the situation could be temporary!” If I get a concrete DX that is progressive (like MS) blue badges are given automatically.

Moyna xxx

Hi Moyna, my first experience was when I had flu, which on top of I helped to organise my father in laws funeral after his sudden death. I returned to full time work after being off to two weeks. That’s when all the fun started. I started experiencing really bad migraines and shooting pains in my spine. The gp thought I had returned to work too early and that I should rest at home for another week. Went back to work after that and started getting the shooting pains in my arms and back, plus my knees kept giving way when i walked. That was the start of the long journey into the nhs.

I was referred to an orthopaedic consultant who after several x-rays, thought it was my spine and I was given a plaster corset for 6 weeks. Boy, that was itchy. After all that, it was decided that it wasn’t my spine and they may never find out. Luckily, my gp sent me to a neurologist who came back with the conclusion that I was a neurotic housewife who the sooner returned to work, the better!! My gp went bananas. I was sent for another referral to another neurologist who ran the usual MRI, lumber puncture and visual response tests. These came back as inflammation on the base of the scull, base of the spine and brain. He couldn’t give a diagnosis of ms though because the government had brought in new rulings, but I had inflammation of the CNS. Over the years, the symptoms have come, gone, changed and I think, honestly, us lot have to be made of sturdy stuff for all the things we go through. I mean, we never know what we’re going to wake up to, do we. I was awarded disability allowance for life, which has allowed me to work around the condition. One thing is for sure, as I also suffered with alopecia, underactive thyroid, mild aortic stenosis, double vision and now one episode of gout, at the grand age of 59, if they stop my allowance, my working days are through. It’s their choice and I bet I’m not on my own. All in all, my story sounds a lot like yours. I hope you get your diagnosis as that would help you a lot. I try not to use my blue badge too often, but there are days when like you, your legs just won’t do what you tell them. Fingers crossed for all of us. We shouldn’t have to fight for a diagnosis or depend on whether we see the right neurologist.

I got pip with no diagnoses only diagnosed 9 months later try not to worry too much.

Hi Moyna, similar to me my neuro said more or less the same:

The MS he said had followed a benign course and has now entered the SPMS stage…

When i first saw him he wanted me in the MS centre for I.V. steroids as i was so ill dead leg etc like i was in a massive relapse, however before i was sent in because of my age i had to have a bone scan and also a water test. I had a urinary infection and it showed ostepena of my lower spine so i was not allowed the steroids, then after several years he realised i was beyond relapsing…

I saw a private doctor a few years back for other issues, she had all my MRIs and i have had a few which i have PAID for, and she did one of the longest neuro tests i have ever endured and diagnosed me with MS without hesitation and also sadly i ended up with positive for co infection of Lymes disease…oh yes and she found out i had at one stage EBV (epstein barr) and another virus…

I dont think our NHS the doctors do enough blood tests for other things either.

You should try for your blue badge again as how can it be temporary? Honestly some doctors do my head in lol.

Anyway i have come to terms with it all, as there is nothing to take for MS at 63 i just live the way i can which is best for me.

Oh and let me say, my uncle is a radiologist in Italy and he explained to me that lesions are hard to see. Literally you can do an MRI every day for 7 days and never see one then all of sudden one shows up its been there all the time…he said LATE STAGE ms IS ONLY found in the spine, and it can be very difficult to see lesions, as some heal anyway but still leave behind disability.

I just dont understand why its so hard to diagnose someone its the new criteria that changed it for a lot of people i know so many who have no diagnosis…i wonder if it is because it is not rare anymore and they are frightened to really put out the true figures of MS, as it would mean they would have to start paying for more research…slap hands naughty cynical maria lol…

Hi longtimesuffer…

He couldn’t give a diagnosis of ms though because the government had brought in new rulings, but I had inflammation of the CNS. Over the years, the symptoms have come, gone, changed and I think, honestly, us lot have to be made of sturdy stuff for all the things we go through. I mean, we never know what we’re going to wake up to, do we.

Just wrote something about that to Moyna…i often wonder if MS is now very common seems more and more people have the symptoms and perhaps the government are worried if they have too many people diagnosed with it, there will be a bit of scare out there…the figures seem to sit steady at 100,000 in UK, i dont believe it. I know quite a few people on many forums who have no diagnosis of MS, but with actually positive stuff…but they are all older…makes me wonder sometimes.

Oh yes i am made of sturdy stuff…like you. I go through hell most days in pain all the time, but i just get on with it, what else can i do.

I am lucky as i am retired now. Woo hoo, i can enjoy my pain at home lol…

If you have indefinate award of DLA you need to check when you will be reassessed. Mine is not until 2015/2016 but they are way behind. You dont need a diagnosis to get PIP ok.

No we shouldnt have to fight for a diagnosis. Its ridiculous. Whats so funny is since i was told ok MS, it hasnt changed a thing, nothing nada, zilch…I still get the same nurse WHO I have a routine with, if i get a threatened UTI i send her down a sample, and i see her if i need too…my doctor treats me with respect and she even organised me to have a blanket cage which helps keep the duvet off my legs which stops them getting hot and uncomfortable. I have been offered all the stuff for MS even I.V. steroids at the beginning. No nothing has changed. I still get Direct Payment which i got before which helps me with a care worker well a personal assistant…and I get my blue badge which i need as i use a wheelchair out. I go to MS therepy centre and hope to start remidial massage in a few weeks.

I am a fighter and will keep going as there is still a life out there for me even in pain.

OMG my dad had gout eeek…not fun, not at all. xxxx from one MS warrior to another or two lol. We are WARRIORS.

Hi Goldengirl (aka mad Maria)

It’s really helpful to read your experiences as I am currently 52 and awaiting the results of my first MRI, so the experience of another “older” patient is particularly interesting, and I thought you’d like to know that you are not the only one who is referred to that way!

Other than a very brief incident of blindness (a few seconds, only) when I was 18, my first possible symptoms started in about 1989/90, with visual disturbances and nystagmus. By 1993, a doctor carrying out a routine medical, paid for by my then employer, suggested talking to my GP about a referral to a neurologist, because there is a family history (sister and one other) of MS. My GP pointed out (quite rightly, I suspect) that one relatively mild symptom would not be sufficient for a diagnosis of MS, and that it probably wasn’t in my interests to push for a diagnosis at that stage.

Anyway, since about 1993 I have had numerous episodes of fatigue, dizziness, restless legs syndrome, and since 2006 have added bouts of weakness and tremor in my hands, and then two years ago I started getting tingling in arms and legs, and now I’ve added the infuriating buzzing from my toes to my head, altered sensations etc and weakness and tremor in one leg. To complicate things, my “relapses” have sometimes (but by no means always) been attributable to anaemia, but I do now refuse to see the GP who once told me that “you are not anaemic now so you don’t feel tired or dizzy”!

Anyway, in November, after a raft of blood tests, my new, lovely GP referred me to the MS specialist neurologist.

By the time I got to see the neurologist, of course, my symptoms had all stopped, except for the vision problem, which is now more or less permanent and the dizziness which comes usually for a few weeks at a time, but can also be triggered at any time by certain activities. He suspects that I don’t have MS because he thinks that if the vision problems of 25 years ago were MS then I would show more permanent damage by now, yet I have no permanent weakness or mobility issues. He ordered a brain and spine MRI but warned me that it was very possible that it would show a number of lesions “because of my age” but that this was not necessarily evidence of MS. I found a great webpage (for Dutch radiologists, I think, but in English) to help distinguish between lesions caused by different conditions (including age-related vascular conditions), but can’t find it right now, unfortunately.

Anyway, I am lucky in that my symptoms so far have been far milder than those experienced by so many people on here, and in between “relapses” I have been able to lead a very active life. So, I just have to play the waiting game…

hello,so interetsing reading about us more mature ladies,and men too i am sure,but we wern’t so mature when we look back to odd symptoms etc,i was asking about a condition called tethered spine,wondered if anyone had problems with it,it is when there is fibrous fatty tissue at the end of the coxyyxx,can cause problums in adult life,i have it,and terriable cramps in feet,among lots of other problems,seeing neuro in march day after my 59th birthday 19th march,love boz xx