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New Member - my journey so far

Good Morning Everyone, sorry if this is in the wrong thread or topic I’m new tonight to this site only just found the courage to join as have been in denial since 9th December 2018 when I was given the statement ‘you have relapsing remitting MS’. I just thought I would share my journey with you all as to how I got here.

I was a 35 year old female, averagely fit and healthy, with a husband and a ten year old child, always had the odd tremor in my leg/back always assumed I’d trapped a nerve or something as it never lasted. 30th May 2018 I woke up and my left eye had what I can only describe as a ‘fingerprint blur’ over it. Rubbed my eye thinking I had some dirt in it etc and it didn’t go away, ignored it for the rest of the day as it wasn’t that bad and I could see ok…I left it for 4 days and each day it got progressively worse to the point where I then admitted to my husband I could not see properly and I was unable to drive (which is hard as I work 40 miles from my home address and have to drive there!) I made an appointment at the out of hours dr who looked in my eye and said he couldn’t see anything but he referred me to the ophthalmologist at the hospital, they rang me to come in 2 days later. The ophthalmologist looked in my eye and instantly said you have Optic Neuritis, I’m referring you to a neurologist and for an MRI as it could be an early indicator of MS - at this point I’m scared - no one in my family has this, I just expected him to give me some medication and make my sight clear again. However he put me on a course of steroids 60mg decreasing dose of 10mgs every three days till I finished the course. It took around 3 weeks for my vision to come back clear and I am extremely lucky to have full 20/20 vision again still to this day. No real side effects from the steroids at that point apart from a few spots on my skin and keeping me awake more than normal. July 2018 my neurology appointment arrived, went to see Dr Shaik - he asked loads of questions - he requested i have my bloods taken and an MRI but he didn’t think it was anything serious as the vision had returned and i wasn’t showing any other symptoms. Went and had my MRI (what a scary experience from someone who has never had anything like this done before!) and blood tests done, then went back to see him about 3 weeks later. He said the MRI that had been done was only of my head and without contrast and there was no lesions on the brain so he wasn’t concerned at all and put it down to a one off occaision, however he wanted me to have a VEP test and sent me on my way. Had the VEP test a week later and by this point had come off the steriods my vision was perfect I felt fine and we went away on our family holiday to Cyprus in August no issues had a great time despite my legs swelling really badly during the flights!

Sept 5th 2018, I’m doing the usual housework ready for going back to work the next day when my mobile rings, it’s the neurology ward clark…she says to me you need to be admitted to hospital today , your neurologist requests you come in today what time can you get here ? By this point i am now really fretting - she wouldn’t tell me why or what for she just said bring an overnight bag as you will be staying in overnight for some tests… so I ring my husband and mum panicking sorting childcare etc and drive myself to the hospital, pay for 24 hours parking (which is shockingly expensive may i add!!) and make my way to the ward, it’s now 5pm and the drs have gone home so the nurses check me in, take bloods and say the drs will be round in the morning, try and rest tonight…try and rest ??? i have no idea why i am here , i feel fine and i am taking up a bed for someone who may need it !! Anyway, the next day the dr comes in and says my VEP is showing a high level of dylimination to the optic nerve following my episode of Optic Neuritus and they wanted to do some more tests,including a LP and a full MRI of head, neck and spinal cord without and with contrast and also want to do an angiogram of my eye. He also tells me my bloods have come back with a high level of Anti Phospholipid Antibodies (trying saying that after a few drinks !!) - a normal person has around 9% of these in their blood stream and i was reading at 135% ! He said he was very surprised i had not had a DVT or a heart attack at that level and he has subsequently diagnosed Anti Phospholipid Syndrome (for those who don’t know what that it is it an auto immune disorder that makes the platelets in the blood clot too thick so i am now on Blood thinning tablets (Clopidogral 75mg per day) for the rest of my life.Following this I had my LP and MRI and I was subsequently kept in hospital for 14 days! My LP was positive for OC bands and my MRI showed a leision on the base of my neck (which didn’t show in my first MRI as they only scanned my head!). Dr Shaik has then said due to all these results he was worried I would get Optic Neuritis again and said if was to get it in the same eye as last time due to the damage on the optic nerve covering previously he was concerned I may lose my sight permantly as it has no cover on the optic nerve now to protect it…so back on the steriods I go - 60 mgs everyday - going down 5mgs every two weeks to help prevent the optic neuritis returning :frowning: he has then sent me home on my steriods, lanzoprozol tablets to protect the stomach, AD-CAL tablets to protect the bones and all them because of the amount of steriods i would be taking over a long period. I was also given Clomazapene tablets to help me sleep as i was totally wired for the the first few weeks on the steriods! I then started with hip tremors and pins and needles in my fingers and back which was hightened when in the shower etc so Dr Shaik has put me on 150mg per day of Pregabalin to try and prevent these symptoms, but he still kept saying he wanted to ‘rule out’ MS …He requested to see me on 9th December following some more bloods tests and another LP and on that date i told him my symptoms seem to be getting worse, i get brain fog and what felt like someone squeezing my chest. Dr Shaik then sat there and told me he could now confirm I have RRMS…and i just said ‘ok , thank you’. I think it was denial, i don’t think it was real, i still don’t if I am honest … I came out of the hospital and rang my mum, she cried and i couldn’t understand why i didn’t feel like i needed to cry ?

Anyway I told my friends, family , work and my daughter and it’s now starting to sink in due to more and more symptoms creeping in. I have just had another MRI 3 days before Xmas and waiting to see how much has been going on since the last one. I’m also awaiting to see the MS nursing team.

Today I am down to 5mg a day of steroids and due to finish them in 4 weeks and i am terrified that once i stop them will this RRMS hit me hard and cause me to go blind?However this time round due to long term steroid use the side effects are horrendous, I’ve gained ‘moon face’ ,I am wide awake all the time i don’t sleep more than 3/4 hours a night (and i work shifts which makes it even harder to function properly!)

I have a million and one questions but have no idea where to start ! All my family are really supportive as are work and friends but they don’t understand it, but to be honest neither do I !

So so sorry for the log post but that is my journey so far, i am looking forward to reading all these blogs/forums and getting more information and background and getting to know more people who have had similar experiences.

Thanks for reading - Emily x

Welcome to the group. It sounds a very scary journey you’ve been on. You’ll find some very lovely and knowledgeable people on these forums who can help ease your mind and provide valuable insights. It’s a great space to vent. I hope the process of coming off the steroids is smooth and event free. Xx

hi emily

what a nightmare of a ride you have been having.

is your employer a large company?

i ask this because the Disabilty Discrimination Act 2010 covers you,

get some advice on this from someone you know and trust.

shift work is a big problem for you.

my top tip is to avoid stress (hah, sez she, at the most stressful point of your life) stress just makes symptoms worse.

another tip is to keep your GP informed of any new symptoms because he/she may be able to prescribe something to help.

it also helps to have everything noted on your medical records.

you come across as a strong woman, make sure you keep strong.

make sure that it’s not all doom and gloom, have a special night out with your husband.

plan your next holiday, meet up with friends etc etc.

take care and be kind to yourself (as in, nobody will die if the ironing is not done).

carole x

Hi, Thank you for your replies, I work for the police answering 999 calls and radio dispatching which is quite stressful however I am in the process of reducing my hours now as I am so tired with everything that has been going on. Thanks for you kind advice and I look forward to reading more and gaining more knowledge about this, got an appointment with my local MS nurse next week so hopefully will know more then. Emily x

Hi Emily

Blimey, what a year you’ve had. I’m not surprised you’re still in shock a bit. What a terrifying journey, and to have anti-phospholipid-syndrome as well as MS diagnosed within a few short months is scary.

Don’t panic too much about going blind. It probably won’t happen.

You should soon (or maybe have already) met with an MS nurse. Honestly, a good nurse is worth her weight in chocolate. They will help you to understand the symptoms, the drugs and hopefully the emotions you are feeling. It’s by no means something you can quickly assimilate, get your head round, or any other platitude that implies ‘now you can think positively’. You need to take some time to feel scared and worry, then to get a bit angry with your utter bad luck and (if you’re at all like me), swear a lot.

You will also be eligible for some disease modifying drugs (DMDs) which aim to reduce the number and severity of relapses. This will help to stave off the threat of optic neuritis. Once you know which DMDs you’re being offered the choice of, you can a) talk it through with the MS nurse, and b) come back to us and ask for thoughts, opinions, and of course experiences.

Best of luck.

Sue

Hi Sue,

Thank you for your message, I have just had a letter from the MS nurses so will be contacting them on Monday to arrange an appointment to see them, and then just waiting for my results from my most recent MRI and then should be able to discuss DMT’s with my consultant.

I am taking the time out to be scared, angry and certainly do a lot of swearing haha ! I will come back for advice once i have seen the MS nurse and the consultant for some further advice!

Thanks again

Emily