So as per the title.
I believe I have an onset of symptoms that I’ve suffered before as a full relapse. How long should I wait to see if they are or aren’t before I contact my MS nurse?
I don’t have any DMD’s only Pregablin for another set of symptoms.
I would contact your MS nurse now and let him / her decide if it’s definitely a relapse. If it is, the sooner they can get you on some medication such as steroids to reduce the inflammation.
I suspected a relapse back in early January. Emailed my MS nurse and she got me in to see her within days. She got me on a course of high dose steroids and because I’ve had 2 relapses within 2 years, I qualify for Aubagio (DMD).
Good luck and hope you feel better soon
Contact the MS Nurse now, mine takes two weeks to reply.
TBH I always manage my relapses myself at home. I use the MS
Trust’s lists for help, to find out what I need, and ask my GP for tablets. My file is tagged and so I get appointments quickly and
help from the Community Rehab Team and MS Nurse.
I only seek steroids from my GP if it gets really, really bad. Generally I GO TO BED for at least a month.
My relapses tended to clear - by themselves after three months - normally with some slight damage each time.
So I’ve had gradual disability over two decades.
Check your symptoms here
Treating symptoms here:
What are your symptoms at the moment?
Get well soon.
Fay
Thanks folks, I have now rung my MS nurse and left a message for a call back.
It is 25 months since my last full relapse and this has all the hallmarks of being the same. I have altered sensations on one side of my face with a numbness to the lower jaw and slight pins and needles in my tongue. I also have Optic Neuritis on the same side with some nerve pain up my neck and to the back of my eye.
My eye isn’t too blurry this time, it’s more like I’ve looked at the sun or someone has let a camera flash off in my eye.
My other more permanent issues are the same although I’m no longer sure that the pregablin helps that out enough.
This has been almost a week now and I’ve been keeping notes in my MS diary.
Deal with the Optic Neuritis - call your GP. You can get better pain management for that.
If you don’t have any infections - you should get some steroids as well. Don’t suffer.
Fay
I’m curious as to why you’re not on any DMDs. Have you not been offered any?
I certainly wouldn’t want to risk future disability by waiting to see if you’re having/not having a relapse.
Not been offered DMD’s before. I did ask about them but I was told that because I hadn’t had two full relapses within 2 years I couldn’t be considered. I have had the optic neuritis three or four times a week for the past year but it only lasts anywhere from minutes to a day so I was told that wasn’t enough. Along with this I have had the obligatory constipation issues and I take Movicol daily for this and the pregablin is for shoulder pain and pins and needles in my hand.
Just a short update
I rang my MS nurse a week ago now and she rang me back late on Friday Afternoon. She advised I get a urine sample to my Dr’s for testing against infections and said to let her know the outcome. She also told me that as all of the symptoms are sensory it is unlikely that I would be given any treatment plan aside from rest and wait for it to subside.
I rang my GP but the earliest I could go to give a sample was today and they would send it off to the Hosp and let me know the next day. In the end I went to the walk in centre Friday afternoon and waited for a couple of hours so that they could dip test the sample and seconds later give me the result. No infections present.
Rang my MS nurse back at about 6pm on Friday and left a message and now I await further contact. It’s all well and good saying get rest but I have to work and taking any more time off just isn’t viable.
So my only treatment plan offered at this time is one I can’t manage.
I feel a bit hard done by all this as my specialist is only counting two relapses in 9 years. My first was major and left me without proper use of one eye for twelve months. the second was 25 months ago now and my eye was again affected but this time only for about a month. I don’t feel like any consideration is made to all the other little things that have happened in-between and that are occurring daily. I was due my 6 month referral any day now but when I rang to see where that was they tell me they are at least two months behind so I won’t be seeing him before the end of September.
Sorry for the rant and long post. Just feeling pee’d off.
Hi Cheetah
I’m not at all surprised you’re p’d off. I would be too.
I question whether optic neuritis can be called sensory unless someone qualified has looked at your eyes and has checked that the optic nerve itself isn’t being damaged. I also don’t really get how an MS nurse can say your symptoms are just sensory so there’s no treatment offered.
This is still a relapse even if it is sensory. I suggest you start keeping a diary of your symptoms. Every time you have what you consider a relapse (i.e. a new or repeat symptoms that lasts at least 24 hours and is at least a month since the last time you had that symptom), make sure it’s reported to your MS nurse at least.
When you next see your neurologist, ask why you’ve not been offered a DMD. Even people with CIS are entitled to one of the first level DMDs: Clinically isolated syndrome (CIS) | MS Trust And to be on none means you are running the risk of further and more disabling relapses.
Sue
The advice I got from my first neuro was simple:
If it lasts for more than 24 hours, make a note.
If it lasts for more than a week - get on the phone right away
Now you are up against the old criteria - less than two years between relapses …
Compared to the new thinking - treat as soon as possible!
The bit of the optic nerve that cannot be seen is that outside of the eyeball.
What really tells one what is going on is the VEP Test (Visually Evoked Potentials). This measures any difference in transmission speed down the optic nerves for each eye.
If there is a difference, then it’s Optic Neuritis, or just plain old MS. In the US, the VEP test is now preferred to a LP as a diagnostic aid, in that it will pick up any differences a lot sooner - and you cannot influence the result at all.
Geoff
Cheetah I feel your pain! I was diagnosed in December 2016 and have been amazed at the lack of support available. When I contact my MS nurse I’m lucky if she responds within 2 weeks - in fact I gave up raising questions or concerns with her because it took so long for her to reply and mostly her response was to send me information leaflets I could have got from this site! Most of my support has come from a charity Support group based 30 miles away from me who I found by searching the internet. I am also in the situation where DMD’s will only be looked at if you’ve had 2 relapsed in 24 months. The problem I’ve got is what I am saying are relapses I’m being told is a “flare up” not a relapse. This is because the symptoms are the same as those I was getting when I was first sent for investigation. My symptoms all seen to be centered around vertigo, dizziness and nausea. I’d had no symptoms for over 9 months then had an attack at school (I teach) so bad I had to go home from work, Since then I’ve had 2 more attacks - one so I couldn’t get out of bed so had to have a day off school sick, the other one again so bad I could only get out of bed to actually be sick. To me having no attacks for over 9 months then 3 attacks in 2 months is a relapse not a flare up. I feel like I’m banging my head against a brick wall trying to get support from the medical profession and am yet again having to go alone to get any help or support. I have started keeping a diary of my “symptoms” and how I feel because I’ve been told that will be needed by my consultant when I next see him - but that is unlikely to be until later this year! Rant over but at least I can see from your comments Cheetah I’m not alone! No help for either of us but it does make me feel a bit better.
Hi Jane,
A self-management mind set is good way to go.
I see it as - managed decline - which needs to be documented - but not always treatable.
Get well soon.
Fay