Newbie awaiting testing for MS, face twitch?

New diagnosis and before diagnosis
1

Hello all,

as the title suggests, I am new.
On my fathers side my grandfather, my dad and both my aunties had MS.

My fathers was secondary progressive, one Aunty with primary progressive and one Aunty with RRMS.

I was my fathers carer from 15 so I’m aware of the long road, I’m not sure if that’s good or bad.

I am 33 (the danger age in my family) and have two lovely young children. Since pregnancy 7 years ago I have had the odd isolated incident (that was written off initially as pregnancy related or childbirth related issues.)

Collectively over time they look like a pattern now. During this intense period of heat we have been having in southern England, I’ve developed a spasm in the left side of my face. Off and on every day for 3weeks now. I lost feeing one morning in the upper cheek side of my face. My lower back (which usually plays up before AF) has been in so much pain. A dull horrid ache for months with no reason for it. I’m fit, healthy as far as I know, good bmi etc.

The depression/extreme tiredness could be the warm weather, the 4 week long period I seem to be having or just COVID!

But after a call to the doc, she’s agreed tests need to be done with such a strong family history and previous loss of feeling in left arm (inconclusive test results for non responding ulna nerve) and well as episode of random vertigo leaving me disoriented and sea sick - whilst on land.

my eyesight it good so I’m holding on to that, but I know all to well that this illness affectes

people in all sorts of ways.

what I am struggling with is not knowing. I’m high on the waiting list for full spinal/brain mri referral but the doc really has no idea with COVID, how long it will be before I’m even offered and appointment for testing.

Has anyone else out there been referred during COVID?

Does anyone have any advice for me of any kind?

thank you all for reading XX

2

Hello Speara, well with a family history such as your`s, I am not at all surprised you are worried.

Although MS isnt genetic, it can be familial…as you know already!

Appointments are all slowed down due to covid…we can only hope it doesnt take as long as some people suggest, to get back to normal.

Hang in there sweetie and all the best.

Boudsx

3

Hi, I was undergoing tests shortly before covid and all my tests that were due to take place were cancelled. Since I have lost some sight in my right eye (I was initially undergoing tests due to sight loss in my left eye that was diagnosed as optic neuritis and I was told it was CIS) I contacted the MS nurse I was given an email for to tell her about the change in symptoms and she sent my email straight to the doctor. 2 and a half weeks later is was in an MRI machine having my whole nervous system scanned, this was Tuesday 2and June. Now I am awaiting results. I don’t know if that helps reassure you that it won’t be too long for you, I hope. And with things opening up a bit, hopefully there will be more tests going on. I’m guessing it depends on where in the country you are, as to how long waiting lists are etc… I’m hating the waiting game and the uncertainty, but I know these things take time and reminding myself of that is helping. I also spend time looking at forums about MS and it reassures me that I am not alone. Sorry if that wasn’t very helpful, I hope you get some answers soon!