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Progressive?

Hello,

I was diagnosed a month ago with MS. My consultant told me that at the moment I look like I have Progressive MS but it’s too early to say. My MRI has multiple Brain and C Spine lesions. My LP has O Bands. My symptoms started in July with occasional tripping & stumbling and now I get fatiguable foot drop daily. I also now have fatigue issues, numbness and tingling in my hands, constipation and urinary hesitancy.

With hindsight I have been told an episode of bowel problems in 2011 was probably a relapse. Does that mean it can’t be PPMS and is likely to be SPMS. I will ask the neurologist who I see again in June but just wondered what you guys think. My consultant did say it could be a very stubborn relapse but as I am over 8 months into this said that’s unlikely.

Snowqueen x

Hi Snowqueen,

I read the Barts MS blog regularily and there is a thought that PPMS and SPMS are really the same. The only thing that in PPMS the person has had relapses that they have not noticed. Maybe they just had episodes of fatigue or IBS. There is one poster on this site who was diagnosed PPMS and has now been told it is RRMS and is starting DMDs.

​There is no exact test they can do to tell exactly what type of MS someone has. Neuros make their best guess but can get it wrong as above.

It really doesnt make any difference whether it is SPMS or PPMS with regard to treatments.

Is the foot drop there all the time or is it still just occurring after a long walk ?

Moyna xxx

Hi Moyna,

​I read that with regards to PPMS & SPMS too. Foot drop still comes and goes but earlier than it did in walks. My balance is wobbly too just walking around the house. Feel like Moaning Myrtle from Harry Potter but just fed up of it all really.

Very keen to crack on with Physio but appointment not until the 11th May. Signed off sick from work now as just needed some head space to get my head around it (if that’s possible).

Quite sad as was hoping diagnosis would bring some treatment options but obviously it hasn’t. Just hoping they have a treatment breakthrough soon.

Keep hoping to wake up and feel normal/ normalish again, do have ok days but have symptoms everyday.

Snowqueen x

Hi Snow queen,

Sometimes doctors give people suspected to progressive MS a course of steriods to see if the problems are solely due to inflammation. If they work then the person is RRMS and can get DMD treatment.

Steriods work in RRMS because symptoms are largely due to inflammation. In progressive MS symptoms are due to nerve damage under old areas of inlammation that happened in the past. Steriods dont work for nerve damage which is why they are not effective in progressive types.

There is hope on the Barts MS site from the Biotin trial. Keep your fingers crossed.

Moyna xxx

it took them 3 weeks to diagnose MS and a year to say PPMS, but could have told them as by that time i had investigated it and i didn’t have any relapses

trish

Hi Snowqueen and welcome to the gang!

You’ve really asked a question that none of us can answer.

I was dx with MS in 2008 and it was about another 18 months before they said it was PPMS (although I realised it was by then).

Most of us with PPMS can look back over the years and see things which were obviously symptoms but weren’t bad enough to see a doctor or were misdiagnosed as something else. I had years of things that I now know were MS symptoms being diagnosed as anxiety and in 2006 I was dx with ME.

So you can see it can be a confusing situation!!!

I think the Barts study of most PPMS actually being SPMS has a lot going for it. I certainly think that’s the case with me.

MS is MS. It’s different for everyone. There is generally a perception that PPMS is the worst type of MS, but actually RRMS can be very disabling and for many, many of us with PPMS it is very slow progressing. Also PPMS can sometimes plateau, when symptoms stop progressing altogether.

So for you I would say it’s a wait and see situation. Time will tell if it’s PPMS… and knowing it’s PPMS won’t really make any difference to how you feel on a day to day basis.

In the meantime, feel welcome to use this board. It’s great for advice, support and friendship… and we’re always happy to have a new user.

Take it one day at a time.

Pat xx

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PS… also meant to say, the amount of brain or spine lesions don’t point to what type of MS it is. Generally they say that people with PPMS usually have more spinal lesions, but I am dx PPMS and have no spinal lesions at all… and some people with RRMS have spinal lesions.

Confusing or what?!

Pat xx

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Hi & welcome

I was diagnosed with ‘likely’ MS a few week off of 2 years ago and the ‘likely PPMS’ which was then confirmed after a year. I was a bit confused and had asked both Neuro & Gastroenterology about tummy problems being MS related as I was still undiagnosed, but both said no.

But a couple of months ago, via a referral from my rehab consultant, I had agreement from a London neuro to get new MRIs and consider 3 DMDs for when we were to meet next… and then I got a call about a trial!

Tomorrow I go in for a LP etc. I definitely have RRMS and quite a lot of scar tissue! But I feel at home here so sneak back

Sonia x

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Hi Sonia, Pat, Trish and Moyna,

Thank you for replying and sharing. It helps me so much to interact with people who I know get this. I am trying to take it a day at a time but I have been sad this week. I am trying hard to stay positive but struggling with the reminders MS gives me everyday that it’s still here. I am sad about how my life has changed in just a few months (since July) and to be honest scared of what might be next. Sorry very woe is me.

Sat out in the sun for a bit today which was good I figured some natural vitamin D might be a good idea. Need to walk my dog again now but waiting for the heat to drop a bit was 26C on the car temp an hour ago.

Snowqueen

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I was dx with PPMS in Feb well neurologist said 99.9% positive then he wrote to my gp and said the same see you in six months then got an appointment through for next week now thinking maybe he’s got it wrong?? Everybody around me says that is wishful thinking but try to stay positive it really does help! You had the mri and lumber puncture same as me and by sounds of it similar symptoms hugs let’s hope for a cure xx

Hi Scootergirly,

Sorry to hear you have been given the MS diagnosis too. Hope your earlier appointment is positive news. I got told when I got my MS diagnosis my Consultant would see me again in 3 Months but he had said as I mentioned it looked like Progressive but was too early to say and he would need to see how things go for me.

How are you doing with it all? I am trying to be positive but am a bit of an emotional wreck this week, I keep crying, I have been off work to get some headspace but am going to go back next week as feel I need some normality.

Snowqueen

Hi Snow Queen, I hope you’re feeling a bit better. I was dx 2 years ago and can relate to how you’re feeling. For months after my dx I would suddenly be hit with the “I’ve got MS and its not going away” thing and spend hours in tears with the finality of it. It’s a normal process, your life plans and future are going to be different from what you expected.

It might be worth reading a bit on the grieving process. Although it isn’t a terminal illness it is a major change to how you’d seen your future and you need to learn to accept it. Everyone copes differently and the time it takes to accept your dx will be individual too. There’s nothing you can do to speed the process up but it’s important to accept the support and love from friends and family, they want to help you just as you’d be there for them if they’d got it.

Forums like this are very helpful too, between everyone here we’ve learnt to manage many symptoms, some very bizarre and their support and friendship leaves you feeling less alone and gives confidence. Other useful resources are your ms nurse, OT, GP and physio. Have you been referred to these yet? If not you might want to speak to your Neuro.

I hope you feel better soon.

Cath x

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Hi Cath,

Thank you for the message and understanding. I’m crying a lot at the moment and I hate it. When I feel down I just can’t pick myself up. I am trying to be positive at the moment but feel like I’m failing. I hate being so tired yet feeling like I can’t sleep because my brain won’t switch off.

I have been referred to Physio see them first time in May, MS nurse have seen and chatted to, GP not seen since diagnosed but have had support from the surgery. See my neurologist again in June.

What symptoms did you have at diagnosis and how are you now?

Snowqueen x

Hi snowqueen haven’t been on for a long time been battling ms fatigue found a drug online called amantadine my gp had task my ms nurse then she had to get neurologist to prescribe and after three weeks if taking it I have seen an improvement in fatigue. Still hae all other symptoms had the ms hug all day today. Anyway referring to my earlier post early appointment with neurologist turned out to be ms nurse so I won’t see neurologist till 1st September 7 months since dx about normal I think think I have come to terms with it never a day without a symptom but fortunately nothing too bad still mobile amd still sighted for which I am grateful for. scootergirly xx Psychology hope your well x

Hi Scootergirly,

It’s been a crazy year, I am good there is now a thought that I had a relapse when I was poorly in March so I have been offered a DMD treatment. Currently sat hooked up having Lemtrada (alutazemab), so far so good.

Have started antidepressants which I hate to admit but have helped me no end, I am waiting for a psychology referral. Physio is going well. Been seen by the bladder and bowel nurse and see her again in September. How are you?

Snowqueen x

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I hope you folks don’t mind me popping in to this thread…

New-ish to the forums and new to ms. I was diagnosed with RRMS end of May, having been admitted to a&e after three episodes of paralysis in a week. The last one not resolving quickly as the previous had. Mri brain showed 2 plaques. Apparently, I’ve had ms “for some time”. Started Plegridy injections and am now on full dose. However, I’m beginning to question if it might be PPMS.

I’m fine walking around the house, but if I’m walking outdoors for any lenght of time, even a short time, I’m getting numbness in my foot, foot drop and feeling “wobbly” from my knees down. I can’t even do a slow amble around the supermarket, without staggering towards the checkout and back to my car. I certainly feel this has deteriorated very quickly and I’m sobbing when I realise just how fast this seems to be happening! I get to see Neurologist (who diagnosed me) at the end of the month and of couse will ask all the questions, but I’m just throwing this out to you guys for your thoughts on it. Thanks.

Mim

Hi Mim,

it is fine popping into this thread but no one here can answer the question and be prepared that the Neuro might not. I still don’t have a confirmed Phenotyoe for my MS and my team have said it might take them a couple of years to decide. I looked like I had progressive and was told that by my Consultant but then had a relapse in March so currently am being treated as RRMS and had a course of Lemtrada.

As you are on DMD I would phone your MS Nurse and talk to her/ him because what u describe is a change in symptoms. You might have active disease and be relapsing again. Ask to see the MS Physio when u speak to the nurse as mine really helped me by supplying a support to stop my foot drop and she put me in a balance group to help improve my mobility.

This is a strange old condition I have only been diagnosed 2 months longer than u. My mobility issues started in July last year and progressed quickly but they seem to have levelled off now. I haven’t improved as such I manage it better post Physio but touch wood my mobility doesn’t seem to be getting worse anymore. I do currently have relapse symptoms but they warned me that might happen post Lemtrada.

Take Care

Snowqueen x

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Hi snowqueen how you doing? Well it’s been six months now since diagnosis had my six months check with Ms nurse and neurologist for someone who thought she was OK not doing so great got another uti currently taking amantadine for fatigue and baclofen for muscle spasms they keep me awake at night which then adds to my fatigue. My neurologist won’t change my diagnosis so I still have ppms as far as he’s concerned according to Ms nurse at neurologist meeting they are going to discuss my diagnosis whatever that means.glad to hear antidepressants are working for you. My ms team is growing and neurologist has refferel me to neurophysiology speech and language team Neurophisiotherapy,cognitive behavioural therapy have ot and social services helping me to! Leg muscles are getting stiffer by the day and footstep is becoming apparent but can’t complain as there always someone who is worse off. Take care scootergirly xx

Hi Scootergirlie, Sorry for slow reply. I am ok but still off sick post Lemtrada as 2 weeks after infusion I got bad reoccurrence of all my MS Symptoms so have felt really poorly. Also got Chicken Pox cause my immunity was low despite being immune on previous bloods. Starting to feel better now hoping to return to work next week that will be 3/12 off longest I’ve ever taken. Doing weekly MS Balance group, seeing psychologist, seeing MS Nurse regularly. Next see Consultant in 6/12. Been assessed as EDSS of 3. Thanks for asking, Take care. Snowqueen x

Also depends on your age. PPMS generally appears in older people.