Am I right in thinking that you have had a positive LP and have the MS diagnosis, but now waiting to find out what type? And of course hoping to get rid of that ‘mild’ label!
Another LP won’t be much use. You have ‘o’ bands and so there is no point in doing another. They don’t show what type of MS or anything about progression etc.
Another MRI of course might show more lesions but it still won’t show what type of MS you have (some people with only a few lesions have very aggressive MS and some people with a load of lesions aren’t badly affected… so as usual it comes back to the ‘different for everyone’ thing).
The only way they can now work out if it’s RRMS or PPMS is to monitor the progression of symptoms and if there are clear relapses. PPMS does fluctuate on daily basis, but there are no clear relapses or remissions. Even though there are fluctuations there are still symptoms every day and progressive in nature (although the progression can vary considerably from person to person).
Sorry if I’ve just told you stuff that you already know!
Glad you had a neuro that listened!!!
Bottom line is MS is MS… doesn’t really matter what type. As Rizzo said, it doesn’t mean that one is worse than other.
Yes agree about the ME stuff. Very difficult illness and the symptoms can be very similar to MS but with no lesions showing… though of course not everybody with ME is sent for MRI. I was lucky to have an ME specialist who sent me for MRI.
Hi Pat, no, I’ve never had a LP. I was referred for one last year but after chasing it for 8 months (no money, money but no registrar etc.) he changed his mind and sent me for my second MRI. I’ve been seeing him for a couple of years now.
I did ask him at my last appointment (March) if I could have a LP and a spinal MRI (haven’t had one) but he said just head for now. I’m really hoping I’ll be able to get these done this year as I don’t think he can diagnose PP without these.
Part of the reason I want to get it sorted out (apart from needing to know what I’m going to do with myself in the future) is that my ESA and DLA will need to be applied for again in February and I’m really worried that if I don’t get as much evidence as I can, I will lose them. I live in a rural area and the nearest bus stop (even if I could use a bus) is a mile away and up a hill so without the money to run my car (good old Bessie) I would be housebound. Will try not to think of it too much for now though.
I was in very much the same boat as you… dx with ME and lesions on brain scan… it was the LP that got me a dx.
Hope you can get one… it might make all the difference.
Technically it shouldn’t make a difference to your benefits (I claimed both IB and DLA with an ME dx)… but with the new changes it might. Can you get a letter from neuro at least saying ‘possible/ probable MS’?
Anyway hon good luck with it all.
Pat x (sorry about italics…if they show on post…dunno what happened!)
Hi Pat. For some reason he seems really reluctant to refer for them, dunno why, but I shall work on him the next time I see him.
I’m ok as far as the dx is concerned as I have it in writing, was just hoping that if it was PP they might be more inclined to leave me alone and put me in the ESA support group. I did manage to claim DLA with my ME dx but all bets are off for next year though I’m hoping I can sneak in before the PIP changeover.
Hope you are enjoying this cooler weather hun, looks like we lucky southerners are in for some sun soon.
Hi Mags I had symptoms for two years when I had a second opinion with an MS specialist. My first neuro discharged me with ME desite having optic neuritis.
I was admitted into hospital for a week and at the end of the week given IV steroids. The MS specialist told me he was 95% sure it was mild MS. I wasn’t allowed to drive due to vision loss and I’d had to leave work due to vision loss, spastic paresis and fatigue.
The IV steroids gave me some energy but my symptoms came back with a vengance. More symptoms came, spasticity increased. Three years later in 2005 I now needed crutches for short distances and a wheelchair for longer distances. The MS specialist discharged me and said it could no longer be MS.
2008 another neuro said it was probably PPMS.
2010 I was referred to a Professor in neurogenetics. I had various DNA tests done, genetic counselling etc. Some form of HSP was suspected due to my Dad’s vision loss and walking problems. The DNA testing proved negative.
I then had a meeting with three DR’s. One the Professor in neurogenetics, a Consultant neuro opthalmologist and another Dr. My optic atrophy they said was due to previous optic neuritis and they felt with this and my spinal cord they doubted an hereditary disorder. I had blood tests done for Neuromyelitis Optica.
I see the neurogenetics team once a year. This year they are looking at HSP again. I’m waiting for a muscle biopsy and possible exome sequencing.
I have autonomic symptoms and your dizziness and palpitations when standing up could be like postural hypotension. I’m surprised this hasn’t mentioned to you before. You can have tilt table testing done to help diagnose this.
Hi Jacqui, I’m so sorry I didn’t reply to your post, I haven’t looked at this for a while. It does look as though you have been mucked around a fair bit. I hope you get some answers soon hun and will be keeping my fingers crossed for you. Let me know how it goes with your new tests but in the meantime be good to yourself and try to get plenty of rest.
As for me, well, saw the neuro today and he has put me in for a LP and spinal MRI ‘as soon as possible’. He dictated the letter to the LP person and said ‘suspected primary progressive’, so I guess only time (and testing) will tell now.
Just going to sit here, twiddling my thumbs and ruminating for a while. You guys know how it goes, it’s one thing to think it and another to hear it out loud. Not sure if I should tell Mum yet, she said she thinks it’s the ‘very mild’ option I was given in my last letter but I think that’s because that’s what she’d prefer, obviously, and she’s been very fortunate with her MS.
Hi Mags… just to say it’s important to remember that PPMS can be mild, and can remain mild, or can progress at a very slow rate. So although PPMS always sounds like the worse dx, it’s not always the case.
Aw, thanks Pat. It could be that nothing shows up, but either way, I’ve been really lucky so far.
Been unwell for 9 years now and only just got my first stick (mainly for balance, and tripping those annoying people who insist that you’re the one who moves out of the way ).
xx