@Issi67

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Issi67

New to the site and need to learn short and sweet!

Hi Melissa and all. Thank you for the welcome. I came across the site today. I hope you’re sitting comfortably and have refreshments to hand as this is going to be a long one! I was diagnosed with MS just over 3 years ago and, as many of you know, it hasn’t been a great ride so far. (Internally shouting “Stop the ride, I want to get off...” Obviously to no avail! One can but try!) It started for me with a late finish from work, me being regularly the last to leave, when I got up from my desk I had difficulty moving my left leg. So much so that it wouldn’t do as instructed and no amount of cajoling would convince my leg that I had better places to be. It took me 2 hours to do what was usually a 20 minute journey....this is London after all, why should I expect anything different...suck it up and join the merry commuter throng like everyone else...something I tried desperately hard to do...not so easy when you’re walking like someone’s fused your knee joint and your leg is dragging behind you like it’s been cast in stone. I eventually arrived at the train station and tried desperately to walk across to the platform. I could see I had 15 minutes before my train left...not too bad on an ordinary day but not so great when you’re dragging this lead weight beneath you and the merry commuter throng decided to get snotty as you are directly obstructing the path slowing their homeward bound journey. I eventually managed to get to the ticket barriers and convinced the guard to let me through so I could catch the train home (I did have a ticket, not trying to cadge a freebie!)...needless to say he wasn’t impressed and wasn’t going to delay the train for someone who, in their opinion had just had a skin full...wishful thinking and so much easier to shake off (plus I’d go so far as saying a self-indulgent luxury that I no longer participate in....obviously, always in moderation!) This was my first experience of not being able to run for a train; lesson learned...there’s always another. Easy to say but not so easy to shuffle across a commuter filled station to the correct platform and board a train that seemed to be as high as a mountain with zero balance and even less speed. Relieved that I’d finally boarded the train and, as it was now quite late, I managed to get a seat. The platform guard who’d helped me onto the train was a very kind and helpful member of the rail service and had discretely asked where I was going to before he blew the whistle for the train doors to close and we were on our way. Thankfully a 40 minute journey which gave me time to recover temporarily before the next escapade of getting from the platform down to street level...this is where I find the station actually had working lifts! So used to running up the flights of stairs that I’d never been conscious that there were such things...a blessing for future journeys. Unbeknownst to me the platform guard had messaged through to the station to let the staff there know that I was having difficulty...they made sure I was able to get from the lift to the pavement without causing an incident and delaying their finishing time with unnecessary reports to write...so helpful. Luckily for me, my daughter had messaged me on the train and had just arrived at the station to pick me up. Such a relief as I didn’t fancy chancing my arm at getting on a bus! She took one look at me and once we’d set off in her car she had decided that we wouldn’t be going left en route to home, instead we’d be heading right which only meant one thing...a trip to A&E. And so the night begins...after a 40 minute wait in the reception area I’d timed it right that we’d go through to see the busy night shift docs, spinning X-rays and prescriptions, diagnosing injuries and mysteries. After what seemed an eternity I was given a spinal sedation and taken to x-ray from which a slipped disc was diagnosed where I was given a month off work to recover. Not completely convinced at that stage as I wasn’t particularly in a huge amount of pain. That wasn’t quite what I’d pictured but at that stage I was glad to get home and rest. Plus the medication they’d given me made me want the comfort of my own surroundings. One month later, having returned to work for just a week I woke up with a fuzzy head and not feeling the best. When I got out of bed and tried to get ready for work, everything that was two foot ahead of me or to the right of me appeared to be doubled up. It’s a hugely strange sensation looking at someone and seeing they’ve got two heads ... and no, again, zero alcohol had been consumed. I couldn’t drive and the phone call to my gp was so helpful (NOT!) I was told to phone my optician. Why? I’d only had an eyesight test 8 weeks previously and had no problems with the glasses I had. Dutifully I did as I was told, these are professionals so who am I to argue? Don’t answer that! The optician’s response was clear and direct...get off the phone and go straight to A&E. They even phoned the unit and told them I was coming. So after a phone call to my daughter and a twenty minute car journey, covering my eyes as my head was spinning with all the duplicated information I was taking in, I had another lengthy spell waiting in a different hospital trudging from one department to another for some kind of reassurance. Multiple eye tests and departments later, I was given these nifty prism lenses to stick to the right lens on my glasses. This weirdly resolved the double vision but set me up for another 6 months of hospital visits, MRIs, eye tests and different strength prism lenses. A brilliant invention, easy to peel off the glasses lens to clean and immediately returns your vision and confidence...whilst wearing them, of course! After 6 months of successful treatment the consultant called me in to discharge me from their excellent care ...but...there’s always a ‘but’...I was being transferred to the care of the neuro department. Why? She wouldn’t say as that wasn’t her role to diagnose. So, another 5 months later, I receive a phone call from the hospital giving me an appointment a further 3 months down the line. As this was shared care across two hospitals there was very little flexibility in the appointment and still no idea of what was actually wrong. Needless to say this appointment kept being postponed so I was advised to contact a different hospital which I duly did and so glad that I did. This hospital took immediate notice offering me an appointment in weeks and light at the end of the tunnel. Great but not so great as I was given an appointment with a recently qualified doctor whose bedside manner needed a little polishing. I arrived early for my appointment to be told you’ve got MS, there’s a list of medication, take your pick and let me know and I’ll see you in 6 months...great! Now I get to pick my medication and learn all about this condition from a newly qualified whose recommendation was ‘Look it up on the internet, have a read and let me know what you decide...’ Needless to say I did my reading and got in touch with a different hospital who had an extremely helpful neuro department that took me on board straight away. Then comes the treatment...self-injecting 3 times a week. I hate injections at the best of times...thankfully I was given an auto injector. Powerful and bruising but a nifty bit of kit when you go into the world of self-medicating. They provided excellent training and gave brilliant support throughout. I was on Copaxone for nearly 9 months when a further MRI showed another lesion on my brain which had no outward symptoms so wouldn’t have been detected but for the MRI. Now’s the time for change, different medication, this time in tablet form and I’m oh so grateful...needles and me aren’t best friends. I was given the choice with a strong recommendation to go for Tecfidera. I have been on these tablets for a while and still get the twice daily flush which feels like the onset of a raging sunburn for about 45 minutes once the medication I s ingested into your system. I’m getting used to it now and wouldn’t swap for a needle given the choice of taking medication three times a week or twice daily. I’ve had my ups and downs. Work has been somewhat supportive but that’s a story for another time. Fortunately for me, the upside of COVID has meant that I can now work from home which shortens my working day with no commute and a leisurely shuffle into the spare room that I’ve now set up as an office. I don’t feel as isolated as many people think as it’s been a battle to get to where I am now. My mobility has been the most affected and I now walk/ hobble with crutches. Itis a decline but there has been worse issues for others so I do consider myself to be quite lucky. As everyone may do, I have the odd day where the air is blue and conversation is quite colourfully tinged with profanities but right now I’m feeling lucky that it’s not as soul destroying as other invasive conditions. I look forward to some slightly (loads) shorter conversations in the future. Apologies for the epic read! Here’s hoping for a better year. Happy 2021 everyone! _ Isabelle @issi67

angieH

@angieH

Hi! You have had quite the journey, not the diagnosis you would want to hear but at least a diagnosis. And the knowledge that there is treatment! I went on Copaxone as well and did not appreciate the injections either! Then a new lesion after about 18 months. Now is the time for change for me as well! I, too, had double vision when I was diagnosed several years ago, that was scary, It just spontaneously resolved after about 3 weeks. I really hope your new medicine continues to work for you! I’m about to switch to Ocrevus, it’s slow going due to Covid though. Keep posting and leaning here! Welcome!! Take care!

Vixen

@Vixen

Hello @issi67 and welcome to Shift. That's quite some journey you've had, and quite a story! I am a similar age and also take Tecfidera. Covid has forced me into working at home too, but I've really adapted and can't imagine gong back now. Do you have support at home? I know your mobility is affected, but do keep trying to do leg exercises to sustain your muscle strength. Good luck with your journey, and remember that folks on here will understand how it feels to be you....

Stumbler

@Stumbler

Wow, @Issi67 , that's some story. Everyone has a story behind their diagnosis, some quick, some painfully slow and some literally taking years. You should have been introduced to an MS Nurse for your area, a specialised nurse who just deals with MS patients. They should be your first point of contact for all things MS, as they have the ear of your Neuro and your GP. You also have a few thousand here that will offer support and advice based on personal experience.

Issi67

@Issi67

Thanks all for the kind comments. I do have an MS nurse but contact has been sparse of late. I think it’s been at least 6 months since I last spoke to her. I will no doubt be in touch with her in a couple of weeks as I have an MRI scan appointment...on a Sunday at 8:30 am...bang goes my weekend lie-in and since when do they do scans on a Sunday....no rest for the wicked, after all it is in my best interest!

ItsMewithMS

@ItsMewithMS

I also started on Copaxone when it was about the only thing available back in 2005. Progressed through Rebif and am now on Ocrevus...they keep improving as does our chances of not suffering more relapses ;-) here's to a non-eventful 2021