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Is it harder to diagnose ppms

Hi, I don’t belong o this site but i just wondered if anyone could tell me how long it takes to get a diagnosis, i feel really stuck , im in a wheelchair and feel as if im just left to get on with things i was ill 6 weeks after a major opp in 2010… falling and slurred speech and very bad vertigo, i got better but never completely I was left with a tremor and terrible tiredness and double vision weak legs and just not able to function properly then in 2013 2 weeks after after a minor opp i collapsed jelly legs jelly arms skin so sensitive that even a light touch hurt… unfortunately all my symptoms have been blamed on stress I.m a lot better than i was but have been left with mobility problems, I can walk with the furniture in the house and if i concentrate hard and keep the momentum up, walk across the kitchen but its as if my brain can’t multi task and if anyone is in the way i fall or if the flooring changes i fall. outside i need my power wheelchair, some days i can’t believe what has happened to me, Im 49 and was always very active. I’ve had mri scans but so far nothing has shown, but I’ve heard that ppms is harder to diagnose. I hope that someone can help Thanks for reading this. Michelle

Hi Michelle, I’ve just turned 48yrs old & this time last year I was diagnosed ppms but thought to have had it for previous 8 - 10 yrs. Neurologist was appalled that I had gone so long undiagnosed as I had been presenting g.p’s with classic symptoms and never had a neurology refferal & Brain & Spine MRI till then.Anyhow the scan showed 3 lesions on the brain and a number on my spine (not specified)& positive reading in my obligon bands from lumbar puncture & the account of my symptoms they surmised ppms.

My first noticeable sign was Lhermittes quite a novalty thought it was funny having electric shocks (Dim I know) then back pain (lower back)the weakness and loss of coordination down one side, vertigo,blurred vision,fatigue, feeling i was walking on broken shells for years no matter what thickness of shoes I wore, my big toe jumping when my foot was touched. The cruncher was dragging my foot when walking that was the last straw.

Like yourself I can’t believe the change in me over the last year, I’ve gone from being a provider to being a dependant.

I officially will be signed unfit for present work officially in the next couple of weeks, I’m hoping I can overcome the physical and mental constraints MS has forced on me and find something positive I can focus on this year.

Pauline x

Hi Michelle, how terrible for you… all those symptoms and no diagnosis!

As you probably know, MS is diagnosed (dx) by symptoms combined with MRI showing lesions, and then if they are still not sure they do a lumbar puncture (LP) to see if the immune system has been at work in the central nervous system (all very complicated!).

PPMS is then dx by monitoring how the MS progresses. So if there are obvious relapses and then remissions it is dx as RRMS… but if it is progression (even very slow progression) with no remission it is PPMS.

So PPMS is often dx some time after the initial dx of MS (although not always… sometimes the history of progression is strong enough to dx PPMS at same time as MS).

The problem you have is that no lesions are showing on the MRI, however this could be for a number of reason… some of the older MRI scanners do not show up all lesions, lesions can ‘hide’… ie not show on the MRI. Also lesions might not show up on the first scan but might show on a later scan.

I think what you really need is a lumbar puncture (sounds scary but believe me most of us have had them without any probems at all).

I think you need to go back to your GP and say you want another referral to neuro… although it might be a good idea to see a different neuro. Do a bit of research online and see if you can find a neuro who’s an MS specialist (many of them aren’t) at a hospital that you can get to.

Then ask your GP to refer you to that specialist. A good specialist should see that your symptoms are very MS-like (which they are) and will probably want to do another MRI scan but also tell them that you would like an LP done.

Another route you could take would be to have it done privately… expensive but at least you might get a dx.

I hope this helps and at least gives you some ideas to work with.

Pat xx

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Thanks Pauline, your message really helped, i feel really trapped at the moment, I will probably change my doctor and the practice i feel as if i’ve been left on the scrap heap , i have seen a neurologist recently Sept time but never had a follow up appointment, infact the only results i’ve seen were over my doctors shoulder last gp appointment when i noticed that their was an abnormality with the serum in the lumber puncture but so far they are all trying to convince me its in my head, I know there are a lot of mimics of ms but I know its more than stress causing my problems and thats what they saying is the cause of my disability. part of me would really love to put this down and just except it, perhaps i don’t need to know what it is. I think you have to be in a good place emotionally to take up the fight again. one doctor i saw recently spoke to me about professional integrity and how one doctor will not undermine another, he was a good guy and really listened but unfortunately a lot don’t. maybe it will be a few more years before I find out.

Thanks Pat, I really appreciate your message you seem to know an awful lot, I feel as if I’ve been treated badly but also left with a mental health label When I was ill in 2010 it was decided that it was stress related, a kind of breakdown, i actually believed them things were very hard my son with Aspergers was self harming and there was an awful lot going on for me but I was surprised because i hadn’t seen it coming, as i said in another message i never completely got better left with a tremor double vision, weak legs ect, but when it happened again with a complete loss of mobility I knew it was far more than stress unfortunately, the Functional neurological disorder was on my notes and without any more evidence, the health proffesionals were determined to make it stick. I’m not sure where to go from here you have to feel strong to take up the fight again and part of me feels as if I could end up feeling even more depressed. Thanks for listening Michelle

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Well Michelle you must take up the fight again. Your symptoms sound very much like MS and you must not let them get away with this crap!

See if your GP will help. If not, ask around and look online and see if you can find a GP who will be sympathetic and listen to you. You must tell them the anxiety dx is wrong and you need to be taken seriously.

It’s possible the initial stress you suffered triggered the first MS symptoms.

They make me so mad when they label someone as ‘mental health issues’ and are too stupid or too lazy to investigate further!!!

Pat xx

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Thanks Pat, i will change my GP I’ve been thinking about it for a while, i saw a different one in the same practise last week, but he works very closely with my doctor and i do feel that they will see me as desperate, I keep having bladder problems so i need to see someone again soon also my iron is very low and I asked him if the B12 was normal or was the fact that I have a very low blood count and have on a number of occasions connected, he didn’t seem to think it was and said the B12 was normal, I really sense that they are at a loss as to what is wrong but would like me to go away and just accept it as stress. I’ve had some CBT the lady i see is lovely I felt that the least thing it would do would be to help me come to terms with being in a wheelchair, it has helped but i still grieve my old life, I really don’t want to get so obsessed with this that it ruins my life, my children need me to be a mum and a happy one,so I’ve got to be very careful that this disability doesn’t define me, I don’t want it to be the main feature in my life, as you can see I am so mixed up and my confidence has taken a real battering. I really appreciate you taking the time to help, I will keep you posted

Michelle xx

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Hi Michelle,

I’m so sorry you’ve had such a rotten time.

Pat has given you some great advise! My symptoms started when I was fourteen…I’m sixty three now…but because I’d had what used to be termed a nervous breakdown, everything was put down to nerves, it was so frustrating as, like you, I knew it wasn’t that.

I think a new GP is possibly the answer…I finally got my dx when I moved house and got a wonderful GP. I do hope you can get some help soon…it’s disgusting the way you have been treated, sadly though it’s not unusual for medics to be utterly hopeless these days.

good luck,

Nina x

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Thanks Nina, i appreciate your message. did you have to wait a long time to get a diagnosis? I hope you didn’t have to wait till your sixties, I think they blame a lot of problems on nerves. I’m determined not to let it get me down.

Michelle x

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I Did wait a long time,Michelle, I was in my forties when I had a new GP who listened to me when I said that I knew the difference between the way I felt at that time and the way I felt when I was suffering nerve problems. My dx took about another three years. I lived in Spain at that time and things got a little complex as there were no English or Spanish neurolagists… I ended up seeing two different German neuros which caused language difficulties. It may have been simpler had I been living in England but even here at that time MRI scanners were relatively new and less sophisticated. It wasn’t until after a lumbar puncture that I had an official dx.

The lumbar puncture was fine, my mother in law had told me it was the worst procedure in the world!! Consequently I was terrified but unnecessarily so, as long as you lie still during the procedure and for two hours afterwards…whilst also drinking a lot of water you should have no after effects.

I think as Pat suggested if you can find a good GP who will refer you to a good consultant with an interest in MS, hopefully they will do an LP and you will know once and for all.

good luck, let us know how things go for you,

Nina

Oh Michelle you must be so fed up. Like the others my dx took a long time and was very complicated. I really feel for you because they kept blaming my symptoms on so many other things eg nasty viruses, slipped disc in my lower back, depression and then spinal cord injury. Because the symptoms are so varied I often didn’t even think they could be real, even I thought I was going mad or had become a terrible hypochondriac. It was awful.

My MRI scan shows the tiniest lesion in my brain that nobody would dx ms from that so they did an LP and it was definitely positive. I was fortunate enough to have a Neuro at the time who realised just how depressed and desperate for answers I was and promised me he’d get me a proper dx and he was surprised that I had ms, he’d been convinced my problems were due to my cord injury.

What I’m trying to prove to you is you need to see a neurologist. An MRI scan alone won’t necessarily be enough, my VEP tests were normal too, you need an LP, but most importantly you need support from your doctor’s. MS is not an easy condition to live with even with the best support in the world, you have the right to see someone you trust.

I wish you luck, please let us know how you get on.

Cath x

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Thank you Cath, and everyone else who has written such kind words, I’ve had a few really sad days, like I know this is real but no one will believe me, to be honest I’ve got where i don’t care what they call it as long as give me some answers and I don’t mean weak reasons, if stress is the reason i’m in a wheelchair then most of the world would be in wheelchairs!! Unfortunately my lp was inconclusive, although i have never had a follow up appointment , and only saw the registrar briefly before the tests and she seemed insistant that it wasn’t neurogical and she didn’t do any balance test in fact she spent most of the time telling me i was just stressed.

I can’t talk anymore my Autistic daughter is playing up. Thanks for being there , im not sure what else I can do for now, i probably just need a break from it all. Thanks for listening. Michelle xx

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I didn’t take long, one day I was fine then tingling pins and needles and legs started to give way still thought nothing was wrong and I needed to lose weight and I did lose 3 stone started to lose my balance and gp said I was fine foe 12 months although first sign was my eye sight.

changed gp in January 2014 had all the tests mentioned plus vep was diagnosed September I asked what kind he said too soon to tell I got a copy of report which says possibly progressive as I’ve been progressing longer then 12 months I was on,y 34 I am now 35 it can be hard but mine was fast all tests were positive not in a wheelchair cause I keep refusing one physio keeps asking me but I use 2 sets on crutches one upstairs one down.

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Thanks for your message, its funny how Gps blame things on weight or stress, i’m thinking if i wait much longer for a diagnosis they’ll say " old age "Its good that you are still managing with the crutches, have a walker with a seat but I ended up sat down all the time it was one that could be adapted into a wheelchair but it wasn’t very comfortable, I use a zimmer frame inside but couldn’t outside I think its much harder outside to keep the balance and also people notice when you fall, i got caught out this morning my daughters taxi caught me crawling up the path id got down with the rail but cant do slopes.

Take care Michelle x

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Michelle it’s common to find it harder to walk outside.

I read somewhere that it’s because we know our own homes so well that we don’t need to concentrate so much to walk, but the minute we’re outside there is so much to concentrate on that we can’t do that and walk as well.

Well whatever the reason, I think a lot of us find the same.

Pat xx

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Hi Pat, its funny you should say that , i often say my brain can’t multi task, i have to concentrate so hard to walk and if anyone is coming the other way i fall i can’t even speak to say excuse me, in the house i fall to my knees or cling to the walls but outside i just couldn’t do it, i can’t do open spaces either i have to walk in very short spaces and keep the momentum going but then when i’m tired the jelly legs take over. and outside the jelly legs are worse.

But… I’ve had better day today, I went to the hospital for opticians appointment and took my assistance dog Frazer, i’ve only had him a month and what a difference he makes people are so much nicer and i no longer feel like the weird woman in the wheelchair, then we went to Costa, just him and me. He’s made such a difference to my confidence, so even though i haven’t got a diagnosis its not all bad.

I hope you are okay thanks so much for all your kind messages

Michelle x

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I didn’t fall for like 5 months for last few weeks it’s like twice a week but I don’t leave house I am not safe at home so it will be even worse outside so I stay inside and on,y time I go out is when hospital picks me up, my gp said he will give me LDN but only if neurologist says so so that’s a no as he already told me do don’t think it helps.

stiffness no matter how much I do physio it doesn’t ease and that prevents my walking more then anything I’m on baclofen which helps spasms a little but not stiff/tightness it’s worse in legs but I get it in hands back and stomach what’s most I can take of baclofen ? Only on 15mg Dailey also is there anything for fatique it’s gotten worse over last year.

so I could get LDN privately but gp seems quite worried it could harm me as it isn’t proven to help Ms but neuro gave me vesicare and that just prevented me emptying bladder so bladder nurse told me to stop it.

So tired so one last question can anyone tell me of there experience with disabled facility’s grant and how long for them to assess you, I am really falling a lot by time I get to top of stairs so I am looking I to it my mum doesn’t think I’d manage in my own place how I am right now I couldn’t thanks for all advice so tired so take care all of you and talk soon xx

Hi, Alysea, I’ve just asked for a disabled facility’s grant to make my bathroom into a wet room. I can’t stand so i have a bath but it completely exhausts me and turns me more jelly like. I think it depends on the Authority,they are cutting funding everywhere. The lady i spoke to said that it was a strict critria and invited me to go to an independent living centre to try out bathing equipment, I told her how hard it would be to get there. so she said that they would assess at home but it would be at least a 34 week wait. and no guarantees that i would get the help. I’m not giving up this would make such a difference to me.

It is worth fighting for I really hope that you get the help.

Michelle x

Alysea I got a disabled grant for a special loo that washes and dries me. When the OT applied for the grant she advised me to get one that would cover the cost to get my bathroom turned into a wet room at the same time but I didn’t want that. My daughter likes to bath and so do I when I feel strong enough to get in and out. I have a bath seat that helps me to shower over the bath and I’m happy with that but I am struggling with my hands and keeping clean. My loo has helped a lot.

My grant was approved within about 3 weeks but it took about 6 months before it was installed as the plumber is one they appoint to do it. I imagine it’s all dependant on your local authority. I’m in Cumbria and they’re trying to do whatever they can to keep us independent and in our own homes.

It may take a while but you don’t have to do anything, it’s all done for you and well worth the wait. Good luck with it.

Cath x

I’m not far from you Cath x

I’m in Lancashire I am hoping they will do a toilet walk in shower and downstairs bedroom I’m waiting for social services OT council have said they won’t give me a house only a flat and no 2 bed in my area and I’m not moving as I’m close to daughters school, I don’t have my own OT or Ms nurse yet this waiting is annoying.

Thanks all your so helpful xx