Hi New here but looking for help.

My wife has had MS for 6 years. Officially 3
Nothing bad has happened before 2023
This last year has been really hard, she has been into Hospital 2 times with the same thing but has had weekly mini ones, but the doctors and the Ms nurse keep telling us MS hasn’t changed and to basically to get on with it.

So going to describe so of her symptoms and can anyone tell me if they have had it?
More importantly what they did to stop or deal with the symptoms.

Pain like a band across the front of head
Pain stabbing in back of head.
Loss of function on one side, lasting anything from hours to months but get it back eventually.
Pain in chest
Problems speaking.

Comes on really quickly nothing to bed bound in 30 minutes or less.

Things Doctor and Ms nurse say:

MS Relapse
MS Flare up

Give nothing for it.

Hi Jfh

I’m a bit puzzled by the MS Nurse saying that on the one hand the MS hasn’t changed but on the other hand your wife’s symptoms could result from a Relapse - which is basically a change. Do you know what they meant?

Also, is your wife on any Disease Modifying Treatment?

From what you’ve described I am wondering if it would be useful for you and your wife to have discussions with the neurologist about changing the Disease Modifying drug?

Thank you for getting back to me.
My wife is on preventative drugs like techfadira (something like that spelling of these things not my strong suit)

So the Ms Nurse doesn’t believe that any of these symptoms are to do with, MS as her scans are showing nothing, and the symptoms are coming on to quickly.
This is my point we have had 3 major episodes but they have given 3 different reasons for them happening.
Trying to get passed the MS nurse seems to be difficult, can’t see her MS doctor for at least another 6 months.
Gp just says get in touch with MS nurse.

Just feel that we we waited for so long for a diagnosis and now we have one, we should be happy with what we have and leave the NHS alone as they are over stretched. Come back when there is something to see on an MRI scan.

What sort of drugs are you taking about?

In sorry to hear about your wife’s experience of late, must be really difficult! But it sounds like you are there for her and really supportive of her :slightly_smiling_face: I am newly diagnosed but can agree with the weird band feeling around my head. It felt like I was wearing a really tight hairband. I would reach up to take it off but nothing there! :sweat_smile: and it lasted about 30 mins for me off and on.
I didn’t know if it was MS, but I know I’ve never had that sensation before my diagnosis!
I also get headaches, but again since diagnosis I’ve had some varied sensations including a stabbing feeling.
I hope knowing she is not the only once helps a little!

Hi j i have loss of function on my right side it comes and goes depending on how much i try and do if i over do it i go all week and loss of function wat i do is lay down flat on a cold floor with a pillow for about 15mins 20mins and i start to get some function back on my one side hope this helps and i know wot you and your wife are going through. My wife has to put up with me just losing all function on my one side . Hope your wife picks up soon buddy ps try and chase up the neurologist if you can to help you .