Hello, for those of you with lots of experience please excuse our ignorance. We are finding our way and between waves of panic and calm periods of this is ok. My husband had two separate MRI. Both show lesions on spine and the Head MRI shows worn nerve endings and lesions. Symptoms wise he has loss of reflex in one leg, toilet urgency and fatigue. He occasionally suffers dizzy spells. We saw a registrar at our hospital and she said it’s presenting as clinical MS. We’ve waited 4 weeks for an LP and a VER test I asked on here about a few days ago. The registrar said he will be seen again in a few months and after the LP, an MS nurse may be put in touch with us. A letter arrived saying he may have 3 days worth of steroid treatment after the LP. The information (aside from MS society and Trust) has been sparse. We can’t see how this is relapsing (I realised we are not medical professionals) everything looks like progressive. He is 39 and in fulltime work in a very physical job. Does anyone have any advice for us? We feel like we are searching in the dark. Like others have I’m sure. We are planning to tell our children soon. Thankyou all again.
I should add he has weakness in his leg, various muscle spacicity and confirmed clonus.
It’s really difficult in the early days to differentiate between relapsing and progressive MS. One of the reasons is that relapsing remitting MS has the kind of name that implies you’ll get complete remission from symptoms. And also no time frame is actually spoken about.
The fact is that RRMS does not always give complete remission. You might find you (as I did) never properly feel your feet again. But you sort of get used to the change in sensory symptoms. And forget what it’s like to be able to feel things properly with your fingers, or soles of feet, or whatever. The other problem is the time it takes for remission. It’s sometimes weeks, but more often (for me at least), it was always months. And so much time would pass by I’d forget I had a problem, until one day things would suddenly occur to me, ‘I haven’t had spasms in my legs for a while, I’m not even sure how long’.
Keeping a diary is the only way I’ve found of keeping track. Even now, 21 years since my first symptoms, I forget when I had X happen or Y. So I check my diary app and can see that X happened that caused me to get Y checked. My diary app is now nearly 7 years old and I check it all the time, even though I’m now progressive.
Neurologists tend to be reluctant these days to definitively diagnose someone from the outset as progressive. One of the reasons is that there are no disease modifying drugs (DMDs) available for PPMS. Even the only possibility (Ocrevus) has been given the thumbs down this week. So if the neurologist is uncertain, they will diagnose RRMS, simply because there are DMDs and because you sort of can’t go back from a progressive diagnosis. And of course, there are few markers that indicate exactly ‘this is progressive’, or ‘this is not progressive’. Often people start with a RR diagnosis and this could potentially change after months or years to PP, or SPMS.
So you se, you ask what seems to be a straightforward question but there are no easy answers to that question.
Add to this the fact that some people with RRMS have really severe, disabling relapses, and some people with PPMS have a much more gentle progression into disability, you can see there are no winners or losers. Unfortunately, we just have MS. And bloody unlucky to have any variety.
Thanks Sue, I realise there are no winners or losers and everyone is in the same uncertain mix where no two people are experiencing the same journey. Right now it feels very much we are not blindfolded because we are having no guidance or support or information on treatment plan or expectations. We weren’t even told at his appointment about the steroid infusion. That was written in a letter to our GP that was cc’d to us. So I haven’t had the opportunity to ask these questions. You’ve helped me rationalise my thoughts today and thankyou for that. Often it’s an unhelpful trait I have going off researching. As a couple I think We need to accept some unknowns for now. Thankyou
Are blindfolded *
Its my wife that has got Ms and i was the same as you was fairly certain that it seemed to be progressive(having read loads and loads of info on everything Ms as soon as the possibility was mentioned) .Until i started reading, Ms was Ms i didn’t even know there were different types! She was left relatively disabled and didn’t seem to be much remitting going on.
The first neuro(who left) we saw drew us a graph which explained she was along way along the line of rrms towards progressive, and then when she got official diagnosis in march the letter says something like “although there are some signs of progression i am currently diagnosing rrms” i think like Sue says unless they are absolutely certain its progressive they tend to give the benefit of doubt so you have the chance of Dmd’s to reduce relapses which isn’t an option once classed as progressive.
Before the idea of Ms came up my wife was injured at work and i spent months helping her fight her employers as they attempted(eventually successfully) to dismiss her. I mention this as your husband is working even though its not specifically what you were asking but if your husband has an ms diagnosis he is automatically classed as disabled under the Equality act and work have responsibilities to make reasonable adjustments etc.Its heavy reading but might be worth familiarising yourselves a little with the equality act in advance of needing it just in case.
Good luck to you both
when you said that the steroids were by infusion i presume you meant that they were a 3 day course of high strength IV steroids. that is what i was given. the way i responded to them is what confirmed my dx of rrms.
Hi Carole, yes I say by infusion and I mean IV but we’ve not had that explained to us as yet so my lack of clarity is down to that. Hi Ol73, thanks for mentioning the work aspect. It’s something we are facing now. He has told his employer and has an occupational health phone interview this week. A friend whose husband suffers Parkinson’s gave us some tips on having some idea on the kind of adjustments he may start to need that way the company are less likely to discriminate against him. For his sake, he wants and needs to stay in his job for as long as possible. We have young children and for his mental Well being any alternative right now he needs the autonomy over that. I will take your advice and familiarise myself Equality Act. Thankyou.
I hadn’t read your original post well enough. IV steroids a few months after a relapse may do some good, but in my opinion, they might do nothing except give him side effects. IV steroids are, I have found, better than oral. Steroids are supposed to suppress the immune reaction which caused the relapse. But weeks or months after the inflammatory activity which caused the relapse, the steroids may do no good at shortening the course of the relapse.
This is what the MS Trust say about the cause of a relapse:
When the immune system attacks the myelin covering of nerves, it causes inflammation and damage to the myelin (demyelination). Messages pass along a demyelinated nerve more slowly or are blocked. This can give rise to a variety of symptoms, depending on the part of the brain or spinal cord that is affected.
(See https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses for the whole webpage.)
And this is what they say about the action of steroids:
Steroids suppress the immune system and reduce inflammation around the site of nerve damage.
(Again, the whole webpage is: https://www.mstrust.org.uk/a-z/steroids-methylprednisolone )
So you can see that steroids which are taken either by IV or orally after the inflammation that caused the relapse has already died down, won’t shorten the relapse.
Before he has the steroids, I’d ask the neurologist what the point is this late on in the course of the relapse.
Hi Sue, I’ve read both those pages previously. We weren’t told by the registrar that this would be a course of action. When I chased the neurologist secretary to determine who we see next for some explanation on treatments she said the letter being transcribed to our GP included the steroid treatment by IV. His leg weakness and falls began last November. We saw a GP early this year. Had first MRI in April. Second in May and here we are now non the wiser. From everything I’ve read with there being a 6 to 8 months period of this relapse, loss of strength in leg, loss of reflex, I as a novice, was confused as to why he is being out through a steroid treatment. But I’ve nobody to ask currently.
At some point I would expect you’ll be put in contact with an MS nurse. They are usually the best source of information since they tend to have a little more time to spend with you. Also, I should think your husband will be given some physiotherapy. If you haven’t been told about an MS nurse, try phoning the neurologists secretary. They are sometimes brilliant (and sometimes not), but you could give them a call and ask.
In my area (West Sussex) we have a community neurology team which includes physiotherapists, OTs, bowel and bladder services and are loosely connected to the MS nurses. Hopefully there would be something similar where you are. It’s very hit and miss as to what services are available in different areas. I think I’m very lucky in what I have available to me.
It really is a mammoth task getting to find your way around the MS maze. There are so many different specialities and you end up being just chucked in the deep end and left to figure out what’s going on and who you should ask for help.
It’s taken me just over 20 years to get the knowledge I now have, but in the beginning I knew less than you do already!
Best of luck with getting some help learning what’s available in your area.
You’ve no idea how much I appreciate having the replies you’ve sent me. At a time when it all feels so uncertain I am so grateful to have people part with their advise. Thankyou again.
I’ve chased again. The registrar we saw 5 weeks ago that told us has forgotten to refer him to an MS nurse, so we have to wait for that now. That’s the person we are keen to see more than anyone. We border Gloucestershire and Herefordshire but we will fall under Glos. It’s not been a great start to their service so I’m hopeful it’ll improve.
Depending on how old your children are you might find these Fact Cards useful to help explain symptoms of MS.
They are at a website called positivelivingwithms.com
Here’s one of them.
i’d love to sleep through a tornado, earthquake, WW111 but my pesky bladder has me awake after 3 hours.
anyway i just tell it to p*ss off.
I’m really glad you’ve at least kicked things off with getting to see an MS nurse. I should think you’ll find you get a really pleasant surprise to encounter a real person who understands the bloody journey you’ve been on.
And as far as appreciating us and the help we’ve been, I hope your husband appreciates the learning curve you’ve been on and how hard it is to get your head round the diagnosis, the different types of MS, the treatments, the prognosis, the everything. He’s a lucky man.
We’ve met with the MS Nurse, he was brilliant with my husband. After months of having no point of contact this has helped. We will see him again in 2 weeks and start to look at DMT options. I’m glad we have this forum too.
Glad to hear that, once we met the ms nurse there was suddenly this sizeable list of appointments coming through,a perching stool ordered etc and suddenly everything felt a bit better and there was support there.Makes a huge difference doesn’t it?
Yep, it just feels a bit more like I know what we’re doing. It’s helped my husband begin to accept this too. Next hurdle is to decide which drug from ones that suggest. We’ve began to tell our children too as they’ve been aware of the investigations like scans etc. That’s helped.
Hello all, it’s me again with an update and hoping for some pearls of wisdom or just long distance support. My husband had his LP, was negative for the protein. Had the evoked potentials test. Also normal. We’ve met with the MS nurse who has been very encouraging, he decided against the IV steroids treatment and we took his advice. Today we’ve met with the consultant finally. My husband’s first MRI showing MS was March! In clinic, he bumbled along showing us letters on the screen that were dating July and August that should have been posted. They’ve not been. He apologised and said it was a lack of having a secretary. He then dropped the bombshell that tgey think it’s Progessive MS. Our MS nurse had said this appointment would be to discuss DMDs. But it wasn’t the case. The consultant said he wants to do another MRI with contrast and a round of steroids. If there’s change in the scan there’s scope to stay in limbo and push for funding for DMDs. If there’s no change he won’t be put forward for treatment as he’d clinically fall into PMS. I realise I’ve waffled. We have literally just left the clinic but I’m at a loss.