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Misdiagnosed

I was diagnosed with MS back in the mid 1980’s, based on history of symptoms. I was told that “I should go part time and would most likely end up in a wheelchair”. I left the consultant devastated but determined to fight it and have been fighting for the last 34 years. My life has been one long struggle and battle but I remain positive and live the best life I can. I went to the doctors last year in the hope of some support with restless legs and subsequently saw a neurologist. After 5 minutes I was told I hadn’t got MS because “I hadn’t been seen by my team before” and “I don’t walk like someone with MS”. After being barked at for not remembering the consultants name from the 1980’s I was given a tiny scrap of paper ripped off a sheet with details of fnd.org and told I could be fully cured. I went home in a state of shock and remain that way now. I asked to see a different consultant that would actually talk to me as if I was a human being and have since seen one who is more affable. However, during the first appointment she apologised for the previous consultants attitude and also for my misdiagnosis. I have since had another MRI and 7 unsuccessful attempts at a LP. I’m just wondering if anyone else has been misdiagnosed? Sorry if I’ve rambled on but I’m new to this!

hello mightymouse

your first neuro was a bit of a d*ck!

“don’t walk like someone with ms” what a load of nonsense

glad that the recent one was more approachable.

seven attempts at LP?

man, that’s harsh.

a misdiagnosis of ms is the worst thing i can imagine.

i do hope that the state of shock has calmed down now.

talk to your ms nurse about it all.

then get back to living the best life you can.

carole x

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hi have you had the results of your MRI?

how are people with MS supposed to walk then.

everyone has it differently. I was told i couldn’t be given a diagnosis as i didn’t present like a classic person with MS.

since then after being diagnosed after another positive VEP test and different lesions on my spine i was told i had PPMS.

my neuro actually apologised and said he had learnt more about MS with me then the last few years, as no two people are the same. he had the positive results for me having MS there was no misdiagnosis.

RRMS and PPMS are totally different diseases although they are called MS i am not convinced they are. My friends with RRMS are really different to the people i know with PPMS.

a LP does not tell you that you have MS it just eliminates all the other diseases which present similar.

So since the eighties what have been your symptoms?

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Hello

I agree with Carole. The neurologist was a total d*ck (and I don’t mean duck!). What an attitude. And what is an MS walk? Some people walk quite happily, just like someone without MS, doesn’t mean they’ve not got MS.

Although perhaps you are supposed to be happy not to have MS?

Unless the d*ck was of course completely wrong and speaking out of his ‘fundament’.

I actually disagree with Crazy Chick. I think MS is MS, I am more like many people with PPMS than people with RR or SP (not sure quite what variety I have now as I’ve just had a surprise relapse, lucky me). Partly because of my level of disability (now EDSS 7). And what’s becoming to be more common is the term ‘Advanced MS’. I’ve also heard the term ‘Active Progressive’ this week.

We aren’t all the same, even those with similar labels. But we do tend to share a huge number of symptoms, even if they are much worse for some than others.

I’m truly shocked by 7 attempts at LP. What is the reason for the failures?

I do hope mightmouse, that you get a definitive answer soon. Or that it becomes pretty much irrelevant, if you’ve lived ‘with MS’ for all these years, it would be rather difficult to change one’s whole opinion of health problems.

Sue

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Hi Sue. I’m not sure what to make of the EDSS scale. I was given a 7.5 almost 3 years ago. About 6 months after diagnosis. I was walking quite well then, using a walker for outdoors. Since then as you know, I need a wheelchair always outside and struggle indoors with a walker. I must be off the scale now! And my neuro can’t decide between ppms and spms… Sorry Mighty Mouse for hijacked thread. X

Hi Poppy

Have you looked at the EDDS scale? See https://www.mstrust.org.uk/a-z/expanded-disability-status-scale-edss

I can’t see that you’d be more than about 7 since you can stumble about indoors most of the time! (Note that the highest point is 10 = dead!) But I could be wrong and maybe you are a 7.5!

I use a wheelchair most of the time, indoors and out, transfer alone most of the time and can manage a few steps a few times a day, but with FES and a walker. I actually can’t really wheel myself outside but have a fairly handy husband to push so use a manual chair. I think 7 is about right for me and that’s what my neuro agreed with last time he considered it.

It’s a sod, I still remember about 15 or so years ago when the neurologist I saw then (the fantastic Professor G) always used to tell me where I had reached - and I had gone from a 1 to 1.5! And then a year or so later to about 2-2.5.

There’s often a bit of a debate these days that the EDSS concentrates on walking ability, which is what the ‘Think Hand’ campaign is about. Since if you have crap legs but your hands are OK, you can manage a lot more than if your hands are also disabled.

I wouldn’t worry about the PP/SP difference, basically it makes no difference to you now does it? MS is crap. Next time I’m picking a better disease.

Sue x

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Yes Sue,I’ve seen the scale. 10. Seriously??? Was it even worth definition?! My right hand is pretty useless now. I can hold a pen or a knife but have no grip so it just looks like it’s of some use. Tg for the motorised chair. X

Hi again, no not yet seen the MRI results I am seeing consultant again on 5th Dec. Am now booked in for another LP but this time under x ray on 28th Nov. Really don’t want to go for it though, it took my back 3 weeks to recover and I’ve still got spider veins around the injection area. Symptoms include exhaustion, weakness, dragging leg, numbness, pins & needles every day plus numerous other ones that come and go. I’m a bit out of touch with a lot of the descriptions on the comments, I’ve not really kept up to date with it all I’m afraid. Apparently they’ve changed the diagnosis criteria and I no longer fit the criteria for having ms. Staying positive though, I’m not giving up yet, just frustrated and would like a logical explanation for what’s going on. Thanks for all your comments, it really helps

I put elastic bands round my cutlery and pens/pencils as I can’t hold the buggers. Writing is more or less impossible!

Sue

Hello again Having an LP under X-ray should be OK. They’ll be able to guide the needle into exactly the right spot and it shouldn’t leave you with such a nightmare back pain. What a horrible time you are having. You are doing very well in remaining as positive as you are. I’d be a snivelling complaining wretch by now. Sue

i think i should have phrased it differently. what i mean is.

a room of people with RRMS

versus

a room of people with PPMS

They are different totally. so although they both have scarring lesions, they are not the same in presentation.

hope that makes more sense.

I have never had a day without MS my symptoms are are mainly from the waist down, where my bestie who has it, has days, months when her MS is in a form of remission. she still has residual symptoms, but is different to me.

so from the symptoms the poster is presenting i would say more likely PPMS. Even the MRI the lesions are more likely to present on the spine rather then the brain.

ppms has less inflammation then RRMS.

Mine has always been waist down and was slow to progress but i never have had a day without it. In the last 12 months i have slowly deteriorated and struggling now to even walk around the house, and the pain is relentless albeit all nerve pain.

that is what I meant.

Hi MM you sound like my friend he is just like you. His leg causes him foot drop too. He was so depressed recently could barely be bothered. He hit a low note when his wife left.

between myself and a care worker we encouraged him to get a wheelchair, and a scooter. It took a bit of time and encouragement but he has a new life now is out to the pub chatting to people and we are so pleased he just got himself a girlfriend lol. His symptoms match yours exactly. Only difference is he was only diagnosed 10 years ago with RRMS.

You could have started in the 80 with RRMS and had many remissions. each one leaving their own legacy of disability.

can you do some sort of timeline for yourself. when it started, periods maybe when you had a remission, and also did anything lately cause you be badly stressed which could have triggered a worsening of your symptoms.

It really does sound like MS but hey i am not an expert. but the criteria MacDonald how can they say you dont if you havent been seen for years and logged.

the LP should be fine with the xray alongside. BUT my neuro doesnt do them now for a diagnosis as he feels they can muddy the waters, and leave people traumatised.

the point is too, i gave up getting a diagnosis, as i thought what the hell is the point to a label. i never got anything anyway i.e. no medication. In actuality, i had full DLA on my symptoms alone, and my neuro and my GP treated me with a lot of respect and i had all the help i needed that someone with MS would have had.

when i finally got told in 2016 nothing changed NOTHING. i just got told that there is nothing for PPMS so i did not gain anything to help me.

x