Solitary sclerosis / Primary progressive

Hello everyone,

I was diagnosed with RRMS March 2015 by a Prof. of Neuro, then he moved away to Scotland ! So I have a new guy and last year after an MRI said he wasnt convinced it was a lesion but that it could be a tumour. Obviously that freaked me out a little so after much thought I asked for a second opinion and he recommended a Prof of Neuro at Bristol. After a visit with him he has said he thinks it is a type of MS called Solitary Sclerosis. On long lesion on my spinal chord in my neck.

Ive had all the usual RRMS symptoms, L’hermitts, Optic Neuritis, numbness, tingling so its all the same but called this because I only have the one lesion (at present). Ive done a bit of research and read somewhere my future will be similar to Primary Progressive.

So I was wondering if anyone had heard of Solitary Sclerosis and also the connection with Primary Progressive symtoms rather than RRMS?

Perhaps hear from someone.

Judy

Hi Judy I’m sorry but I really don’t know but I’m sure that there will be other people on this forum that might know. I hope that you are okay it’s hard having any kind of neurological disorder whatever it’s called we all try to support each other on here and it’s lovely to have new people. Michelle x

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Thanks Michelle, it was so nice to receive your message and you are very kind. When there are things going on in your body and you dont know whats happening its just freaky, frightening etc but weirdly when the diagnosis is given for me it was a case of ‘so thats what it is’ because like many of the postings Ive read thats what happened with other people on here.Michelle what is your background are you PPMS and hows it going?are you on meds? have you had any relpases as Ive read there is PRMS now. its hard to keep up with it all isnt it?

What a strange disease this is. Judyx

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Me…well Judy sadly im quite alone in that not having a respectable diagnosis im a bit lost…I think that ive got ppms the symptoms seem similar but ive been told because theres no evidence even though i have a significant physical disability and that its anxiety (FND) Ive been unwell for the past 6 years first with the weakness double vision slurred speech which was an episode back in 2010 which i ended up in hospital with then in 2013 similar episode that left me with needing a wheelchair since then its stayed pretty much the same… i manage but have never got better. My mobility in the home is limited but i manage crawling, furniture walking ect and falling a lot. The biggest thing that helped was cbt…they hinted / promised that this would make me better…yippee I would walk again! Sadly it didn’t happen …but it helped more than i ever imagined it helped to change my outlook and i made myself a promise that i would enjoy my life and always do my best and that meant not giving in…My life now is full of adventures…I go everywhere in my power chair with my best friend Frazer, as most of my friends on here already know, he’s my assistance dog trained by Canine Partners. he’s the most adorable cheeky funny and lovable Golden retriever you could ever meet…I don’t now where id be without him…but with him by my side I feel i can conquer the world… Instead of hanging my head and feeling rubbish im a person again and i can look people in the eye and have sensible conversations, i no longer feel disabled…But Im human and unfortunately still have bad days…today has been one of them but i know it will pass and writing all of this just reminds me how far i have come and that i have so much to appreciate.

Michelle and Frazer xx

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Michelle,

ive just read your message and not her one you have sent (not to me) about a bad day you are having. Sounds grim and from my experience days like you are having always come in a huge great boulder to knock you flat. But. It doesn’t last, it never does and even though you can’t see a glimmer of contentment today tomorrow will bring fresh thoughts and new beginnings on every level. Look to the sun and the shadows fall behind you. Keep your chin up Michelle. Judyx

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Aww thanks Judy, we are tough and we will both survive.

love Michelle x

Neurology is a guessing game and I reckon there are a significant number of people diagnosed with MS because they cannot think what else it could be. You say that you one lesion in your spine. That will cause symptoms below that point ie legs body and arms but will not cause symptoms above that, If you have had optic neuritis then that will not be caused by the spinal lesion. Never heard of the diagnosis of Solitary Sclerosis. Have you had a lumbar puncture ?

Hi Moyna, yes I’ve had a lumbar puncture and it was clear. I’ve had ON twice, L,hermits and a relapse at Christmas. Like many of us it’s the not knowing what’s going on. First diagnosis by a Neurology who is renowned in the U.K. diagnosed MS March 2015 then March 2016 another neurologist Prof suspected it could be a tumour hence the LP but he still wouldn’t agree with the first Prof so I asked for a second opinion and a third University Prof again a top guy has said an ‘MS type illness resembling solitary sclerosis’. The lesion is on the spinal chord mid neck area.

Wheelchair kamikaze (do you read his blog?) has been told he’s got Solitary Sclerosis. I think it’s a new Mayo Clinic find! And the outcome does not make for great reading.

It’s so frustrating for all of us with this odd disease isn’t it.

judy

Oh Judy You are so right!! I have never heard of Solitary Sclerosis either. But I am nothe a doctor. I have always been told and read basically there are 4 types of MS. Benign, relapsing/remitting secondary progressive and primary progressivery. Four the first three types there are treatmentsome to help but not cure. For my type PPMS there aren’t any treatments at all. A lot of people find it very difficult to get their heads around. “In this day and age there must be” they cry!! But there isn’t. I 7nderstood 5hst many years ago and so it doesn’t bother me and I don’t spend hours searching the net for a cure. Far too tiring and a complete waste of my time. I want to live my life! Another doctor once told me this is the hardest illness he knows to look after. It is mercuria and different for each person. So may I wish you luck in yr futuré. We aré à good bunch on here and welcome new people. Anne X

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Anne what a lovely reply and you sound so upbeat and you are right too much time can be spent scouring the internet although I must admit the last week or so I have been. Mostly at night just before I turn the light out which is not a good time as it plays on the mind. The solitary sclerosis mimics PPMS so thats why I put it on this forum but when I look on the web Solitary Sclerosis is still being discussed through the different MS clinics with only about 30 people worldwide known to have it. Guess thats make me unique ! - not.

As its PPMS as you rightly say there is no cure but apparantly there is something in the pipeline if you believe what you read in the papers. It was mentioned a couple of weeks ago but I dont think anyone should hold their breath.

Anne do you have relapses with yours? At Christmas I had a terrible time and started to go blind in my right eye after having exacerbated symptoms for about a month so took some steroids and it sorted me out good and proper. But I think I read somewhere that PPMS does not have relapses although I think (again!) there is now Progressive Relapsing MS. Will it never end?

Judyx

Hi Judy

Like the others, I had never heard of solitary sclerosis, but I am not the doctor. As you say it is rare, so you are unique, I have had ppms for many years now, and really hope this up and coming treatment will help new people being diagnosed, but I think my damage has been too long.

As far as I am aware, or lead to believe, steroids do diddly squat for ppms, but is a useful tool for Rrms.

Pam x

Pam, thanks for the reply and thank you for the ‘diddly squat for ppms’ info which may mean Im falling in the other camp. Time will tell though and thats the worst thing on this rocky road is the not knowing.

I hope the new treatment is what is needed for MS and for you Pam. I really do. We must never give up hope as ultimately that is all weve got, but then again looking at the wider picture that is all anyone has got, MS or not. Kind of sums up this whole enchilada of life thing doesnt it?

Good to hear from you.

Judyxxx

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by the way Pam - skippysprite pic - I like it !

Jx

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Hi Judy. Usually with Ppms you do not have relapses. May there is a type if primary progressive with relapses but I personally don’t know about it. Originally I was dignored as RRMS but then after a couple if tears it was changed to PPMS. Steroids do not help with PPMS. Tired tonight so signI g ogg. Sorry for typing Ight Anne x

Is solitary sclerosis an autoimmune disease also? If so you could look into HSCT. Its is available in the UK to a small select few but worth asking. I have had it in Mexico and am so pleased that I did. I am members of forums and there have been remarkable results. It may not recover function but there is an 80% chance that it will stop you getting worse.

Hi Moyna, yes its autoimmune and apparently takes the same route as ppms or prms. Basically it’s called the solitary sclerosis because it’s just the one lesion causing havoc. Thanks so much for the info nation Moyna I’ll look into that. I’ve not come across HSCT before but will check it out. I see my neuro on the 23rd. As everyone with this disease any information is greatly received. Many thanks.

Judyx

Hi my name is Karen and I was diagnosed with solitary sclerosis in 2012 ( single lesion on my brainstem) this came after years of tests, mri’s lumber punctures etc - all negative. The symptoms are getting worse, left sidedweakness !!! My left arm and hand don’t work at all and I now walk with a stick !! No research because of its rarity xx

Hi Karen, so sorry in my late reply. I’ve only just found your reply to my original email in January 2017! How are you now over a year and a half later? I hope things have settled for you. I have deteriorated with tremors, spasticity in my legs and arms and nerve tingling/pins and needles regularly. Last Christmas I could not use my arms and hands with the pain of the muscles and was prescribed baclofen but it does not help with the tremors. Do you have tremors? I have them on waking mostly and it’s like a huge vibration running through my body. It’s horrible. Anyway maybe I can hear from you?

Judyx

I was recently diagnosed with Progressive solitary sclerosis. Wondering if anyone with it has an update on their progression.

My new diagnosis is Spinal PPMS. The diagnosis is new but the condition is 22 years old!

Boudsx