Hi all. Last Monday my neurologist confirmed a new small lesion on my MRI so confirmed the diagnosis of MS. At this stage she isn’t sure which type I have and because my boyfriend and I are keen to have a family she agreed while I’m not having any symptoms to stay off meds and monitor my progression. I have an appointment in 3 montha for review. I also have a referral to an MS nurse for Friday. When I saw her I was having a lot of issues with neck pain and tingling in my arms and hands. She told me it wasn’t MS related and probably just from stress in general. The last few days it hasn’t really improved and I am dizzy and my legs and feet are also and little numb though not as bad as when I had my CIS. My question to you all is. How do I make sure that I don’t assume everything is related to my MS? At what point should I be considering calling my neurologist with issues? I don’t want to become a pain and I don’t want to assume everything is MS but I also don’t want to ignore something that might need to be looked at. How did you find a healthy balance? Thank you for your time x
It’s really difficult in the early days (and DMD free) to establish exactly what is and what isn’t a relapse. The general rule of thumb is that a relapse is a new symptom, or an old symptom that had reoccurred more than a month since the last time. And the symptom should last for at least 24 hours.
However, while you should make sure relapses are recorded (maybe with your GP or MS nurse?), if you’re also staying off meds because of baby planning, would you be prepared to take steroids for a relapse? If not, just an email to your MS nurse would have the relapse recorded.
Meanwhile, just keep in mind that not everything is MS. Be careful not to miss potentially difficult health issues because you are MS focused.
Try keeping a health diary, that way you can record how you feel as and when different things happen. You don’t need to write it everyday, but it’s a really useful tool to look back on. I’ve been keeping one on an app for about 6 years and it’s really handy.
It appears that Copaxone is safe in pregnancy. “Pregnancy is an important issue in the DMT space. As you know the majority of pwMS are women and as the average age of onset is 30 years of age pregnancy is a big issue. The good news is that the EMA have allowed the pregnancy guidance of glatiramer acetate to be updated; in short GA is safe in pregnancy. The label change was based on the outcome of over 8,000 pregnancies over a period of more than 20 years.” Multiple Sclerosis Research: #ClinicSpeak & #NewsSpeak: glatiramer acetate and pregnancy
As I’ve never been offered DMD’s I’ve had this discussion many times with my MS clinic.
“How do I know If I’m relapsing” ??
I’ve certainly got worse over the last 5 years since being diagnosed, so my argument would be “I must of been having relapses at some time to get to the stage that I’m at now”, but apparently this is not how the MS clinic see it !
They (MS clinic) say a relapse is a sudden deterioration with perhaps a new symptom that lasts over 24 hours.
I guess, thinking back I’ve never really experienced a dramatic, all of a sudden change in my symptoms, it’s always been a gradual decline in condition.
I’ve not needed to be admitted to hospital.
So I suppose their argument for not to give DMD’s is correct ?
I can offer two examples, firstly my sister who also has R&R MS (15 years diagnosed), has had a few relapses, but they’ve always been a few years apart, and although she has mobility & balance issues, which like me have gradually worsened she was never offered DMD’s either, however her last relapse was about 6 months ago where she was taken into hospital for a few days and put on steroids, 3 months later she had got over the worse and was basically back to where she was before the relapse, then just 2 nights ago she had another relapse, again taken into hospital but this relapse effected other parts including her speech, she is still in hospital at the moment.
The MS clinic has now said that due to the fact she has had 2 full blown relapses within a year she will be offered DMD’s.
At what level she’ll recover from this latest relapse only time will tell ?
This is the problem with a relapse, how hard will it hit you and how far back will you come from it ?
The second example I can offer is that my first cousin also has MS, but when she was first diagnosed, coincidently around the same time as my sister she started having many relapses within a few months of each other, each one leaving many lesions within the brain, so she was put on DMD’s almost immediately.
She’s actually doing very well, but in the beginning when first diagnosed she wasn’t very good at all.
Personally I think I would take DMD’s if offered, but I dont think it’s a simple case of popping a pill and the MS goes away for ever.
From what I’ve read it’s a big decision to make !
Thank you for replying. My boyfriend had testicular cancer 2 weeks ago and had surgery to remove both. As such our only option now is IVF. I have started the referral process because it can take months. I am unsure how the view medicines that suppress my immune system and right now i don’t think I’m having any symptoms so I’m happy to wait it out. My neurologist is very sweet and says she is just a phone call away should things change. The main concern I had really is just knowing when to call it a symptom of MS and when it’s just a symptom of an illness. I hope maybe my MS nurse will be able to offer some assistance with this. I am going to buy a diary to record any noticible changes that I can then with them about. Thank you all for your advice!
Thank you for your reply. My first relapse that was of note was the loss of feeling from the waist down. This led to my hospital stay and they called it a CIS. The diagnosis was given only because they saw a small new lesion appear on my scan 3 months later. I don’t think I am having symptoms. The stiffness in my neck and back and dizziness I also think are from stress. My boyfriend being diagnosed with cancer and a possibility that I had crohns have been the not so fun topos of 2018 so far. I just want to make sure I’m not associating everything to my MS. I want to make sure I am approaching this all with a rational mind.
Its far far too easy to blame every little twinge on MS. My MS nurse told me once that I have to stop blaming the MS for everything. For a couple of months I was getting a stiff neck with dizziness & headaches, which was so obviously the MS in my mind ! Then by pure chance I came across a site about Magnesium overload, which gave the exact same symptoms that I was currently showing, coincidentally these issues had started not long after starting the Magnesium but I didnt connect them together until I saw this write up on the net, so I decided to stop the Magnesium, bloody hell, within 24 hrs its was like a ton had been lifted off my shoulders, no stiff neck no headaches or dizziness. It was the Magnesium, yet for some people Magnesium is a great benefit. Oddly I had taken Magnesium in the past without any problems but this time it caused problems.