Need a handhold - possible MS

[emsmum79]

Hi all, I'm needing a handhold please. Strange vertigo for over a year, more recently strange sensations and pins and needles in my hands and feet. Dr has pretty much ruled out everything and I'm now waiting for a neurology appointment to see if it could be MS. I'm feeling really scared. I'm early 40s with a 5 year old, a job, active life etc.

I just wanted to point out that not all MS is the relapsing/remitting kind, which I think most posters on this thread have identified. My friend has progressive MS which does not come and go. However, it has now been 5+ years since her diagnosis and very little has changed for her since then as it is progressing slowly. She still has the same job, etc.

OP, I have another friend who had similar symptoms and she did have a brain tumour, but it was benign and she actually lives with it now and will continue to do so unless it gets big enough to require surgery.

I have Relapsing remitting, the symptoms came on at age 20ish such as numbness, tingling, couldn't differentiate hot from cold, tiredness. MRI confirmed small lesions.

Barely any symptoms since (I'm now 34), mostly just temporary numbness, especially post exercise, mostly on my face.

Randomly, I had a numb foot and lower leg for about 2 months at the end of last year, but this didn't stop me doing anything and didn't hurt. I did have a chat with a neurologist, and he booked me for a check-in MRI, which showed no new lesions which was nice to hear.

I'm not on any meds as I'm almost asymptomatic I suppose.

But I was advised by a neurologist to take a huge dose of vitamin D daily so I take 4,000 unites every day and will do for the rest of my life.

So it hasn't affected me at all really so far, but a pp summed it up really well, that the thought of it suddenly rearing its ugly head is a worry but I don't think about it every day any more.

@Nandocushion, your post is very sobering. But, thank you for posting- good to see all scenarios. I wish your friends well.

@sausagepastapot, thank you. I hope you also stay well.

Hi @emsmum79 I'm sorry that it must be such a worrying time for you. But to add to what other posters have said, I also have MS (relapsing remitting type) and most people wouldn't even know and seem quite surprised if I tell them. I have a 3 year old and generally get on with my life as I did before my diagnosis with just a few tweaks here and there (mainly to manage tiredness) and my twice daily Tecfidera tablet (which is a type of DMD).

Another one with MS here.

I won't lie. At first it is terrifying, you can only imagine being in a wheelchair and losing all independence. But you get used to that anxiety and learn more about it.

You learn to live with fairly okay/milder symptoms. I've had pins and needles from the mouth downwards for 3 years. It can be a little painful at times but manageable.

MS is so different for everyone, no two people are the same.

It isn't the death sentence it once was. I was diagnosed with highly active MS but thanks to Lemtrada I've been relapse free for 4 years.

Good luck. You will be fine.

I'm pleased to hear it's not the death sentence it once was.
The different types are hard to cope with, I feel. A worrying time.

How are things @emsmum79?

I am also a fellow MSer on tecfidera. I am 40, diagnosed in 2016 but it was found on an mri I had in 2006 and can trace symptoms back to age 21 I have RRMS and lead a normal life. I run, cycle hundreds of miles a week, do weights etc. I do get more tired maybe than you’d expect - but then I am so active, maybe not! It isn’t a great diagnosis to have hanging over you, but life goes on in most cases. If they have an MS centre nearby, oxygen therapy is good.

@girlsyearapart, not too bad thank you. Feeling much the same. Still waiting for appointment.

I have MS, and was diagnosed when I was 20.

Do remember that the vast majority of people who see a neurologist with symptoms similar to yours do so to rule out MS - I am not sure why someone would even mention MS at this stage to you. The overwhelming percentage of people who do go through MS investigations do not end up with a diagnosis of MS.

Also, appointments pre-covid for initial MS assessments could take up to 9 months to come through - you may want to ask which referral track you were placed under rather than expecting an appointment to come through soon. It can be a very long journey.

I had similar symptoms end of last year. Went to a&e one day as was so scared when I woke up one morning feeling numb and with pins and needles and dizziness. A&e first asked if i was an anxious person generally. When I said 'really not the consultant referred me for an mri the following week for possible MS. Scan results came back clear and no known reason for the 'flare up'. Since the mri i have had continued pins and needles but less often and less severe. I am waiting for the covid situation to die down before going back to my gp for further investigations. So yeah in a nutshell, despite what Google says, it might not be MS!

@emsmum79 hi! How was your results? xx

A good friend has MS and I wouid never know!! You can drink me under the table!

*she can drink me under the table!