NEVER GIVE UP - FINALLY DIAGNOSED AFTER TEN YEARS

New diagnosis and before diagnosis
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Ten years ago 2006 i saw my neurologist because of all the issues i had and having to stop work. My first MRI i paid for of the head. They found loads of high signal foci in the deep matter of my brain, but put it down to AGE.

My second test was a VEP test. It showed i had optical neuritis in both eyes 115.5 in left eye and 111.1 in right eye. Still nothing just get on with it basically, and i did with all kinds of ongoing issues. You know the score, it started all left sided, foot dead, legs tingling, you name it i had it.

MRI vague lesions. Still nothing. So i kept going, more issues, more illness, less mobility, it was just on going.

More MRI, more vague lesions. The disease was not running like RRMS because it was just ongoing all the time. I was warn out with it but kept going, hoping one day something would be the last bit of the puzzle.

Then lumbur puncture, i thought maybe this will be the piece to complete the puzzle. No it wasnt sadly as it was a match result. Loads of O bands in the CSF, but matching inflammation in the blood tests, so off to the rheumy i went perhaps it was their field. Nope she sent me back to neurology after blood tests and told them it was them that needed to deal with me. I felt like a ping pong ball lol.

So another MRI, and another small lesion T1 this time. Still no diagnosis.

Then just before xmas i was called to neuro for a follow up and he did a card test with colours and i had to tell him what the numbers were. One side was very slow and i struggled to see the number, so he ordered a VEP test.

Nearly 3 months later i had given up thinking the results were just clear when i got a letter asking to see him, and an appointment as there was positive results on the VEP test he need to discuss with me. Rather then wait another month for the appointment i paid to see him last night.

So after 10 years seeing him, he finally said well I can now offer you the last bit of the puzzle and tell you as from today i am dealing with you as an MS patient, you will be sent to pain clinic, and also he is organising some new meds to be prescribed by my GP i lost it by then something to do with new meds from London which is showing good results for people like me who have MS in the spinal cord. I am not sure i was stunned by then.

He said if he didnt know me, when i walked through the door he would have just assumed he was seeing an MS patient as in the last six months i have deteriorated and my walking is going down hill. Also my left foot is showing awful cramp issues with my toes, which are leaning upwards in constant painful spasms, and my foot is lifting and tripping me up.

So basically i have another bout of ON as well. I cant go on steroids as i have osteoporosis.

I wasnt sure how to deal with the news to be honest i was stunned and shocked lol, its taken so long to get there. He did say if the LP had been clear of the blood, i would have been diagnosed then. He did agree that perhaps the inflammation in the blood was coincidence but he said he has a protocol he has to work within.

So there you go. Today i have MS label, and to be honest i dont feel any different lol…after all that, just that maybe now people will treat me differently and now i might get some meds that work.

So the thing is guys if you are undiagnosed and struggling keep the faith. If it is MS it will eventually show so there are no questions. It might take years but you will get there in the end. I just wanted to share this to give some of you hope.

I do think though my age also played a lot of the decisions in getting a diagnosis, as i am a lot older then the age group.

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Congratulations - sort of! Good for you, persevering. That will surely give heart to others who despair of ever finding out what is the matter.

I hope that all goes well for you.

Alison

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Eeee lass…eckythump and well I never!

I wish I knew you by another name than Crazy Chick, `cos i feel i want to add it to the start of my reply eg;

eee lass, our Sandra!

Your post teksa bit of wading through, but I knew it`d be worth sticking with. I have a bit of difficulty teking a lot of info in at once.

So after all these years, you finally get your label.

I searched for my label for a long time too…as you`re probably aware hun.

When I was propelled from pillar to post and back again…and for another time yet again…I fet like a bagatelle…similar to your analogy of being shoved hither and tither!!

So now I do hope you`ll be given some meds which will help you.

btw…can I ask how old you are chuck?

luv Pollx

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Hi and well done for believing in yourself when other did not. Can i ask you what diagnosis you were given if any for all your symptoms before your ms dx.? Did spine mri show lesions before DX?

I feel like im at the start of my journey and not getting anywhere fast. I know my symptoms are neurological but dont know the cause. Mri showed some abnormalities and radiologist said could be due to demylination but neuro ignored this.

Iv got second opinion this week with private neuro in Leeds and hope he moves the investigations on.

Christine

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Hi Poll I am 65 chuck.

What was sad my neuro said to me, that MS is so difficult to diagnose if it comes in the form of spinal MS. If its in the brain and you have lots of lesions, it affects your speech and upper motor skills, but as you get older it tend to come in the spine and you end up with lots of vague and weird symptoms, which i suppose is true, as one of my friends has MS when he was 30 and his speech is really poor now you know he has MS, and his upper skills are poor.

Anyway my neuro said sadly he was going to have to move 3 of his MS patient out now as they have started to develop symptoms which simply dont belong. I found that strange, not then, as i was taking in so much.

Then i thought i wonder if they have a quota of MS patients lol, and now if he has to move 3 out, there is room to put 3 back in its really odd what goes on in my brain lol.

They do have very strict guidelines though, so i suppose if our MS is just being naughty they are tied.

Montel Williams the chat host in USA he started exactly same symptoms as me, and it took him EIGHTEEN years to get a diagnosis, so it happens to the famous too lol. xxxx

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Hi Christine, my neuro always told me i had inflammation of the central nervous system cause unknown for now.

I had TWO second opinions. One actually mentioned one of the lesions i didnt even know i had, but said i probably had CFS, the other one said he hadnt seen my notes, but expected i had Neurological Functional Disorder lol. Then he wrote and said well he had finally seen my notes, and couldnt add anything and hoped i got answers soon, as he coudlnt say i had NFD as you cant if there are positive results on your tests lol. I feel like writing to both of them and telling them to shove their second opinions and asking for a refund lol.

The thing is I think its early days. If i did it all over again, i would just wait and hope that MS would finally show itself which it did.

10 years isnt actually that long in the grand scheme of things. I think if its late onset it takes longer to progress, if it present when we are young then it seems to show quicker and has a rhythm like RRMS. Mine was just ongoing symptoms from 2006 with no let up. HOWEVER, prior to that i can trace symptoms back to 1981, with lots of sections of my life with weird illness which kept hitting me and knocking me for six, so who knows when it really started.

Stay positive and keep your nerve. If its MS it will finally show itself. I was never frightened of it to be honest not like if i had cancer or something, as at least I knew MS wasnt going to kill me. Since my journey i have lost several friends to cancer.

Good luck with your appointment. I think one of the things you need to read about is the criteria for diagnosis. It does help.

xxx

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Hey Crazy Chick. Just been reading your posts above, is it easier to diagnose when ur younger then because I’m only 34? Xx

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Not sure if its easier, but my neuro said a lot of younger people seem to present with lots of positive stuff and they match the macdonald criteria more from the get go. I can kind of see that as all the younger people i know with MS seemed to get a diagnosis really quickly. It only depends on whether they have the correct test results and dissemination in time to get the diagnosis though.

I never had dissemination in time, as mine just seemed to start and well never finish lol…i dont get rests its ongoing. x

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Hi Crazy chick,

Does that mean if you get a symptom such as leg numbness, is is always numb and so on.

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My foot was numb in 2006, upwards a bit too. Over the 10 years it has varied in numbness. Sometimes it feels numb and squishy, but i can feel it, weird or what. The other day when i saw the neuro, he touched around my ankles i could feel it.

When he did the stocking test on occasions with a pin I wouldnt feel it. But i can feel it i know its mad isnt it lol.

So yes it feels numb really bad somedays especially if i have a UTI, or get too hot, and other days i just get cramp and spasms and it hurts like hell lol. x

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sorry i wish we could edit. The other day when the neuro touched around the ankles i couldnt feel it. x

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Thanks crazy chick,

Im understanding it alot more now. My numbness is mainly on my feet and legs which is worse at rest. My toes on my right foot are quite numb and dont move like my other toes. Like you say the numbness varies and i get that squidgy feeling like iv been walking in water wearing socks. My symptoms never fully go and i dont seem to have a complete relapse as such. Im 57 which may be the reason…

Until a short while ago i never really thought about ms as a cause of my symptoms because i have a cousin with ppms who went from his legs giving way one day to not being able to walk the next. I now realise that ms symptoms even ppms can have at times subtle symptoms that can wax and wane.

Christine

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For what it’s worth here’s my ha’penny worth…

My first symptoms appeared when I was 20. I had numbness all down my right side and double vision at the same time. I had a couple of tests, including a lumbar puncture but they were inconclusive so I was told it might, or might not, be MS. A few months on the symptoms had completely resolved and I really thought no more about it - I decided I obviously did NOT have MS.

I only noticed ‘something’ again four years ago when I joined a gym and it became obvious to me at least that my right side was weaker than my left. I wasn’t particularly worried about it so I kept going to the gym and I got myself in pretty good shape. Last year was when things slowly ramped up a bit - I started limping - something that other people noticed before I admitted it to myself. I was persuaded to go to the doctor and get it checked out by a colleague. So six month after admitting I actually had a problem i’ve had a diagnosis of RRMS. Looking back over the last 35 years I probably have had symptoms of MS but I have always put them down to other things.

Reading other peoples’ stories on here just make me believe that there is NO typical presentation of MS at any stage, at any age or with any particular symptoms. I have been very lucky so far (fingers crossed that continues) and it does seem to be the luck of the draw…or which way the wind is blowing etc etc that determines how this disease progresses for each individual.

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Actually what you wrote is more or less what my neuro told me. He said some people do have MS for years and years, and have one incidence and never another until years later. Thats why its so hard to get a diagnosis.

I think i had my first symptom in 1981, when my arm kept going numb…

I do think MS is so variable everyone has it differently. I know loads of people with MS, and everyone is different. The one thing in common though it seems that everyone has just one side weaker then the other. Mine is the left. My right side isnt too bad, all i get really on my right leg is the odd burning sensation, and prickling in the thighs, otherwise its all left sided.

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Hi Crazy Chick, I was diagnosed last month (Feb 2016) after seven years of slowly progressing Neuro symptoms. I too have been to many neurologist. I’ve had various opinions including, FND (like yourself, which I knew it wasn’t), progressive myelopathy and then medically undiagnosed. After waiting and trying to get to Queens Square in London, I was eventually diagnosed with secondary progressive ms plus the after effects of a stroke that I thought I’d had after surgery for trigeminal neuralgia in 2009. No other neurologist has ever mentioned my MRI showing brain damage from a stroke before. How and why it takes just seeing one particular neurologist whose brave enough to admit it I don’t know. My Neuro thinks that from my medical history I’ve more than likely had ms for at least 28 years, but I’m one of a few, rare cases that the tests are not conclusive enough. I’m now being treated for ms (IV steroids this month). I don’t feel like I’m going mad anymore lol. X

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Hi Tracey its vindication isnt it. You know your ill why wont they believe us lol. I knew i had MS the day my neuro (at the beginning of my journey) offered me to go into hospital for I.V. steroids as i was having such a bad time. I had urine test but it showed infection so i couldnt have it done. So if he didnt think i didnt have MS he would never had wanted me to go in there in the first place lol.

They do have a protocol to work within, and we just have to wait until all the boxes are ticked. I was SHOCKED actually with my VEP test result being positive. I was convinced it would be negative and i would carry on slowly getting worse and worse with no label. But when i found out it was positive i cried. It shows activity more so then an MRi in some respects. My last positive one was in 2007 i think or 2008 cant remember but about 8 years ago, and in between i had several spinal lesions.

My neuro was shocked when i walked in to see him, as last time i used my wheelchair but i wanted to show him i was trying lol, and he saw the state of my toe which is just standing upright, and my foot wont go down and i trip up all the time.

I am just happy i can move forward, and hopefully get some relief.

It was so good to tell my family that I have MS, so next time i say i cant travel to see you because it tires me out they might believe me lol. xxxx

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Gosh guys, this makes fascinating reading. I think I must be the only person in the world that has had a, more or less, instant diagnosis!

One Tuesday night, having gone to bed with a cold/sore throat, I found I couldn’t move to get out of bed. I sort of slithered to the floor and landed on my back, now totally stuck. Right side paralysis. Hubby came and found me and had to help me/walk me to the loo. Once I was back in bed it sort of wore off so we were puled but not overly concerned and I (co incidently) had a follow up appt next day, for on-going knee investigations.

My knee had given way once in the past two years, leading to physio/x-rays/mri. A year later began odd pins/needles in foot so mri spine was ordered, suspecting a trapped nerve there. This was the appointment I was going to, for the report, and it seemed likely that this was indeed going to be the outcome. Next day, (Wed) I was told no problem with spine and about to be written off. Once consultant heard of my episode, an urgent mri was ordered. Had that Friday. Small hours of Saturday morning two more episodes of paralysis, where husband had to hold me up and drag me to the loo! Ambulance to A&E, iv antibiotics for uti they discovered, rakes of blood work and the mro from day before was reported. Consultant informed me 99% certain it was MS, but would see Neuro later. That evening on the ward Neuro confirmed from physical exam and mri, there was NO doubt it was MS and that I’d had it for some considerable time. I was so shocked. 0 to 60 in a few days!!

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Wish there was an Edit button for a brief while after posting! :-/

That should read Puzzled. My zzzz’s don’t always work.

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It weird when you read others journeys. I too had issue with one of my knees, it would just give way. I found after having a bath i couldn’t get out, and i would have to take a colder and colder bath as after one bath i literally couldn’t move or get out, my husband had to help me, and i was so weak i literally couldnt move. I had no idea this was a normal reaction to MS and heat. I just lay on the bed scared to death. Then slowly it all came back to normal and i felt better.

My journey started when i couldnt get out of bed on a Monday morning for work, my legs were locked, and in spasms, stupidly my husband thought a hot bath would help it just made it worse, as we still hadnt twigged that link between hot baths and MS symptoms lol.

The amount of times i had to ring my secretary to take me to work as my legs were just full of pins and needles. I was frightened many days but i tried to just get on with it all, i thought it was stress from my job. Its odd when you start to look back at all the weird things that happen, even the constant UTI wetting yourself, you never think it could be MS, well to be honest i never even thought of MS until my neuro mentioned it.

I am glad someone was diagnosed in a timely manner.

Would it have changed my outcome if i had been i have no idea, maybe i coped better for not knowing, as now i know weirdly enough i feel worse… and struggling to just get up now. xx

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That’s interesting about the hot baths. I have had to give up having a bath, because after ten or fifteen minutes I feel so weak I have to get out and lie on the bathroom floor! Thankfully I am still able to get out of course. (And luckily we have a shower!)

I can’t believe what it must be like to be ill for ten years and not know what’s wrong. I’m glad you’ve got some answers now.

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