Hi All I have just been diagnosed with MS. Literally on Wednesday. I have been having symptoms for several months but unfortunately my ophthalmologist decided to drag the process of diagnosing my optic neuritus out. The symptoms started a month after starting ny new job as a Dr Surgery receptionist/admin. The timing of all this is typical of my luck in life. I have been granted a week off of work to travel down to my mum and tell her the news. So I’m sitting here at 1 o’clock in the afternoon procrastinating. It should be a simple enough journey to then return and deal with other aspects of my life that I will need to rethink, however, bundle on top of my news a global pandemic… From what i have read we should be all social distancing but at the same time it says on the front if this site that I dont necessarily have to self isolate. Then on top of that I’m so daring if I should return to work at all knowing that I work in an office with mothers who have small children. My Dr Surgery has closed it’s doors to patients. That doesn’t stop them turning up and knocking on windows. Urgent cases are still being seen by Drs in an area designated as “red zone”. I’m new to this condition. I dont know the official name of the type I have. I have been referring to it as the on again off again type. I’m yet to meet my MS nurse so am not taking any medications. I am still symptomatic in that I am numb in random places all over my body. My shoulder has been numb so long my arm is very weak. Monday last week I worked 4 hours and slept before my shift then 8 hours after my shift then again that night. I dont want to overreact and leave my colleagues in the lurch but at the same time my instinct is saying I dont want to be there. I mean, I would like a different job entirely but that’s tomorrow’s problem. I would sincerely be grateful of advice. Please and thank you. Wendy
Hi Wendy, I think your manager will tell you if you should work or not.
You need time to get your head around your new diagnosis. Souds like you have Remitting/Relapsing MS. There may be meds to help stop it progressing…but consider the side effects befoore you decide.
Take care
Boudsx
Wendy,
As you say, the timing of this diagnosis
is less than brilliant. There is never a good time but this combination of circumstances seems particularly suboptimal. Whilst it is good to know that you do not want to cause hassle for your colleagues, you need to break this complex combination into a number of smaller ones and to prioritise between them. I won’t presume to know you or your circumstances so I would not dream of offering strong opinions. What I will say is that from an MS perspective you should listen to your body and if that means you need to be a bit selfish if it means you might have an easier mid to long term life.
Gather opinions and info from people you trust to help you weigh up the best options for you and your family.
i wish you all the best Mick
Hi
I am so sorry I didn’t respond to these comments, I didn’t realise anyone replied (didn’t get a notification). I have a new dilemma which has been touched on in another post I read.
I left the above job at the doctors surgery and got a new job 1 day a week and bank at the same business in another department (end of August). I am still in my probationary period until end of this month. I have only just got access to the MS nurse and am yet to receive any medication (my neurologist forgot to forward my details!) I started relapsing on 26th December but my nurse was off for xmas so it wasn’t confirmed that I was relapsing until 5/6th Jan.
My nurse told me I needed to be off work which I knew would cause issues. I had been covering for people testing positive on PCR tests and also annual leave. My bosses (2 different departments) tag teamed me for 3 days to get me to work on 8th Jan and I managed to get myself covered for 9th Jan (I had a fit note from 8/1)
My main boss (from the contract side) has been emailing me weekly, I guess to see when I would be back (which I couldn’t answer).
I received in the post today a request for access to my medical records. I haven’t made any requests to change my working environment or hours. They are fully aware of why I am off, I told them during interview that I had MS. So they know I will be returning once this relapse has passed.
I’m just wondering if there is another reason for requesting this access? Do they need it when it turns into “long term sickness” as the 4 week period is approaching? I am very reluctant to give this access. My boss has already demonstrated a lack of confidentiality and they have also demonstrated a complete lack of empathy (I work in the care industry btw).
Thanks in advance for any and all advice. I will check my notification settings!
Wendy
Hi Wendy
Is your boss a GP?
If so s/he will have access to your medical records via the online system but may need your permission to do so.
I am very annoyed by your neuro “forgetting” to forward your details, you must be hopping mad.
Take care of yourself, your well being is a big priority.
Sorry if my reply doesn’t make sense on account of my brain being stupid.
Good luck
x
Hi Catwoman (never thought I’d say that!)
No I work in a residential / respite / supported living environment. I’m just not going to sign it. There are no “adaptations” that can be made to help me currently so as far as I can tell the information is not needed.
The only thing I use a lot of is “post-it” notes as I also have a very mashed brain 
but then I’m happy to buy them myself if they want to cause a drama about that!
Thanks for the response
Wendy x
Hi Wendy,
I think you are right not to sign the form requesting access to your records. Did they give a reason for wishing to have access? Irrespective of that, I think for the reasons you have described, you don’t need to grant them access at the moment.
Have you consulted with your GP to let him/her know that they have made this request ? It might be worth having that dialogue I think.
Also has your MS Nurse let you know when he/she might be able to discuss with you about the meds you might require ?
I’m disappointed to hear that given you are working in a respite care sector that you have employers who are not showing that much empathy towards you and I hope that may change and improve.
Do keep us posted on developments.
Take care,
Matt
Hi Matt
Thanks for taking the time to respond. My medication has been authorised but I am still waiting. It feels very much like covid is taking precedence over everything else. My hubby has had a double hernia untreated since August - apparently he’s “on the list”.
The only thing the letter said was it was to “address my absence fairly and reasonably” …“ability to perform your job and the prognosis for your future health”. Which I read as “we need a reason to be able to sack you as we know legally we can’t”. I spoke to the boss since the letter and she hasn’t mentioned it…at all. In my mind they have fit notes from my GP so they can’t argue that score and they know I am relapsing so unless i have irrevesible damage I can’t see they have any ground to be honest. To your point about the empathy from the care sector when I was first signed off, 8/1, (been relapsing since 26/12 but ms nurse off until 5/1) both bosses tagged teamed me for 3 day to get me to work 8th and 9th Jan as it was “short notice”. If I had tested positive on one of they’re stupid PCR tests there would have been no question to me leaving the premises via the nearest available exit. The world has gone backwards and I’m happy to be at home at the moment.
Which brings me to my question 
This is my first “relapse”. My initial symptoms lasted for months and included blindness in 1 eye. The symptoms this time are milder (I guess because I’m not trying to work 40 hour weeks throughout this time). How long on average do these things last? I know it’s a, how long is a piece of string?, question but in everyone’s experience what is the shortest relapse they have had. I also have no clue if having been on the medication helps or not when it happens.
tyia
Wendy x