Diagnosed over Christmas

As a parting gift from 2020 I have been diagnosed with MS. Not sure which type I have yet as it’s fairly early days but this is my second “episode” so to speak.

My symptoms are numbness & tingling all down the left side of my body, my left hand has lost it’s strength immensely and I can no longer walk as far as I could before.

Along with this, I also have double vision, I have no idea when this is going to go away or if it ever will but this is by far the worst to me, my eyesight is everything and I’ve always had 20/20 vision, no need for glasses, sods lore.

My brother was also diagnosed 3 years ago when he was 24, he’s 27 now. I’m 30 so it’s bizarre how we both have it!

I only started with leg numbness/feet tingling on my left side around 6 months ago, then maybe due to problems at home which involved a lot of emotional stress it spiraled out of control and I needed to be admitted into hospital for IV steroids. I’ve had 5 doses and now back home, trying to come to terms with everything. I’m not going to let it stop me from enjoying my life with my wife and eventually having a child when the time is right (if that’s such a thing).

I’ve got an optician appointment on Monday with a private local company as opposed to these big firms so I can get a more personal approach, my fingers and toes are crossed that they can do something in terms of a prescription “prisms” to help get rid of my double vision whilst wearing glasses, even if it means just sitting still!

My follow up appointment is in 4 weeks with the neurologist specialist, I have some time yet but I am trying to get a list of questions together. Is there anything I should be actively doing to help with my symptoms? The fatigue at the moment and feeling like I’ve been in a fight is what is slowing me down massively. I use to train 3-4 times in my own home gym and do over 2 hours of walking daily (dogs). I managed to do a total of 70 minutes yesterday (2 seperate walks) but by 6pm I was exhausted.

I have pictures of the MRI scans where the troublesome lesions are, 4 on the brain and 1 on the brain stem. Along with other little ones which are not a concern at the moment?

Any advice is greatly appreciated.

Hi planty90,

I was diagnosed 2yrs ago after years of misdiagnosis but when I was given the diagnosis it was almost a relief to know that I wasn’t a hypochondriac (GP diagnosis).I have worked for 38 yrs in nhs as a CPN and had started to believe myself that perhaps it was all psychological.

Any way 3yrs ago I had a nasty"relapse",pins and needles in both feet,numbness and tingling down my left side ,severe coccyx pain,loss of balance ,severe fatigue ,bowel and bladder issues.,weakness in left eye.This is when investigations started and eventually diagnosed with brain lesions.Diagnosed with RRMS.

My symptoms from that relapse did eventually improve but it took some months and some of the symptoms stayed but are manageable. Stress and tiredness definitely makes them worse.

Fast forward to today…I now understand more about ms and the barrage of strange symptoms that come and go and some that stay with me and worsen when i am stressed or over do it.

For me slowing down and taking more care about myself both physically and mentally has helped.

  • You should be allocated to a ms nurse after having neuro consultant apt .The ms team have been helpful and I have met others with ms when having infusion and this has been really beneficial.

  • ms nurses can refer you onto other services if needed

  • Disease modifying drug options will be discussed (I an on Ocrevus infusion)don’t be afraid to ask what options are available to you and which they would recommend.

  • Using sites like this has been helpful for me .

  • Try not to use Dr Google too often !

  • Be assertive about your needs with health professionals.

  • ms is under the disability act and employees should accommodate your needs where possible.

Understanding that although ms is a chronic progressive disease each persons symptoms and progression varies MS isn’t a death sentence ,life does go on ,and like life generally you can have good and not so good times. Some adjustments probably will need to be made but this can be a positive change.

Is Ok to have mixed emotions and have bad days but there services ,family support and MS sites that can help ,but life really does go on and you have so much to look forward to by the sounds of it.

All the best.

Oh mate it’s harsh it started end of July for me and as of yet there’s no let up. ,I don’t let it get me down you got to be positive. Ive had to stop work and sell my car but yòu have to adapt and survive. Regards Carl

Hi to Planty 90 and Carl, as newbies.

Hello you 2…welcome to the club we wished we never needed to join…but here we are…a bunch of people who get what you feel like. Having MS isn`t what we wanted and we can do chuff all about it.

Some folk fight against it…to me that`s a waste of precious energy.

I`ve had this MonSter for 23 years! I have no mobility and need a lot of help from carers.

However I still enjoy life and adapt it to suit my needs.

Best bit of advice I can offer is;

pace your activities

get good quality rest

and always accept help when it is offered.

Take care guys, Boudsx

Hi Kerste, I was wrongly diagnosed too…with something which carried a 50% chance of me passing it down to my offspring. That was devastating to me. When a genetic test proved I didnt have it (HSP) it was a huge relief.

You gave great advice to Planty.

Best wishes Boudsx

I must admit I am hoping that I can return to some form of “normal” so I can carry on doing day to day tasks without the added challenges. I am slowly getting use to my double vision but still holding on to hope that this fades or I can get some form of glasses with prisms that will solve the issue when I have flare ups. Instead of wearing an eye patch all the time when watching tv, going for a walk or chores around the house!

Just waiting on my follow up appointment so I can get allocated a nurse, my wife will be joining me on the appointment as I know she will want to get as much information as possible to help me. She’s been amazing as always so far so I know I’m in safe hands regardless, think she’s struggling to see me less able as I’m a big DIY kinda guy and don’t like spending money on getting someone in to do a bodge job!

I left my engineering job a little over a year ago and joined my wife in her own business which is actually a godsend now considering this has happened. Eager to get back to work but we both know it’s going to take time and we’ll have to adapt. We were in the middle of drawing our plans up for an extension to our home as well, luckily we are able to adjust now to future proof incase my mobility is affected even more.

The only thing that bothers me is my eyesight and I really am holding up to hope. Not sure If I should as it might not ever come back but I guess I’ll deal with that if it comes to it.

Bad sleep really drags me down I’ve noticed, but that’s a given! Along with too much sugary food, being around Christmas there is way too many temptations around the house! I’m a healthy weight and fairly athletic, or was. Just keen to get back to it! I’ll be starting physio next week as well due to losing so much strength/mobility in my left arm… not sure If I can get funding help for this?

I will certainly ask about DMT’s if things get any worse or don’t get any better.

Thank you all for the advice given so far!!