Over the last few weeks I was suffering with tingling and numbness in my legs and arms, also face. I was getting bad headaches and what felt like a tap had been turned on inside my head.
The mri came back with white spots and the doctor said that along with my symptoms could potentially be ms!
This has completely thrown me as I’ve always been pretty healthy. Since June this year I have had symptoms come and go. Lasting anything from a few days to a few weeks, then it completely disappears!
I am waiting for an mri on my spine to determine if I have ms. The doctor said that ms was highly possible.
I am really suffering with the symptoms and I’m scared this could be really bad.
Has anyone else had these symptoms come and go really often?
Could be MS, could be Fibromyalgia, or Lupus or… These autoimmune diseases can be difficult to nail down. Sooner it’s diagnosed, sooner you can get medication. Good luck
You sound really down. And I’m not surprised. Symptoms since June seems actually quite quick to have gone from ‘pretty healthy’ to MRIs and ‘possibly MS’.
Don’t start living like it’s definitely MS or anything else that’s truly scary yet. Until the (fat lady?!) doctor says it’s X, Y or Z, it’s not. But I do understand that’s easy to say and hard to do. Being a mother (young boys?) makes it somehow more difficult to forget the fear I’m sure.
Just supposing it is MS though, it’s not a death sentence, neither is it bound to lead to severe disability. There are now many disease modifying drugs (DMDs) available. These aim to reduce the number and severity of relapses of MS. You could find that a diagnosis of MS, from being a terrible fear, in reality makes just a small impact on daily life for many years to come.
Keep talking to us on the forum though. We can’t answer all your questions, but we can help with some.
Thank you for the reassurance, I definitely need it right now. I have to admit the process has been pretty quick but that might be because I’m so anxious that I’m constantly calling the doctor as I’m so scared!
It’s the unusual numbness I’m experiencing currently that I don’t like. I had the first experience of this in June then again about 5/6 weeks ago, but now again.
Reading up on ms I see that it can flare up anytime but also read that people have rather large gaps between relapses.
I know I’m like most people and when they get told bad news they think that’s the end and that’s what scares me! Is it normal to have these symptoms so close together?
I don’t know anyone with this and it makes it even harder to deal with. I know I haven’t been diagnosed yet but like the doctor said all of my symptoms relate to ms. It’s also really affecting my work as I can’t switch off from the worry! It’s just so scary! :-(.
In terms of frequency of relapses, there is no ‘normal’. Just like everything connected to MS, what’s normal for me may not be for you. So there may be longer intervals between relapses for some people. Over time the intervals between relapses are likely to change.
I think what you might do well to concentrate on is the statistics related to MS:
About 85% of people diagnosed with MS have the relapsing remitting variety, aka RRMS. The pattern of your relapses seems to indicate that this is what you’ll be diagnosed with.
There are now 14 disease modifying drugs (or DMD’s) licensed for RRMS
DMDs are designed to reduce the number and severity of relapses. The effectiveness is measured by the relapse reduction rate
So, although you’re facing quite frequent relapses at the moment, I’m sure you’ll soon be started on a DMD that stops them in their tracks.
I just want to say how grateful I am for your reply’s. Although this is still all so new to me, listening to other people’s experiences is kind of reassuring. I know I’ve still got so much to learn and understand, I’m just really hoping to start to feel normal again soon.
I’m at that stage where all these weird feelings and sensations scare me, so hoping that medication will start soon and I can put this at the back of my mind.
I do have one question? I have recently been having what I can only describe as little shocks from the top of my back to the bottom, almost like a nerve was trapped for about a second and it’s like a buzz. Does that make sense?
Still haven’t had the next mri appointment yet but fingers crossed that comes soon.
Yes I am exactly like you. Symptoms started in April with muscle pains then quickly led into more snd more happening to me. Have been unable to walk randomly for 1 day. Power issues in my arms. Lost my sight for 4 hours last week. Feels like tingling all over my body. Arms are so painful some days. The doc at a and e told me could be ms now waiting for neurologist appt
I haven’t had the unable to walk or sight loss so I can only imagine how that must of felt! Mine is the constant headache, weird dizziness and the constant numbness/tingling in my arm and leg! Had one mri and was told it could be ms. I have a spinal mri tomorrow so hopefully I get the answers soon.
It’s only been a few months but it’s already taken over my life and it’s so hard.
I was so grateful for finding this website, I’m just still so scared!
Thank you so much it really means a lot, hope you will be ok too. It’s such a scary time for all of us but yeah I totally agree on the positive outcomes that are on here.
!
x