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Returning to work after diagnosis

Hello all!

Brief background- I am a 28 year female. Work as a doctor- I’m a paediatric trainee. Just got married :slight_smile:

I have just been diagnosed with MS. Symptoms started whilst I was on honeymoon- intermittent loss of sensation in my feet, which was so fleeting I didn’t think anything of it. Symptoms progressed when I got home, with increasing sensory loss progressing up my legs. At the end of September, I saw my GP and got referred straight into see neurology. MRI showed a lesion at C7-T1 and I was diagnosed with transverse myelitis. Had an LP done (had an absolutely dreadful time after this with low pressure symptoms), which was positive for oligoclonal bands. VEP was negative. The initial MRI showed no lesions in my brain and just the one lesion in the spine. Had 5 days of oral steroids. I had a repeat MRI with contrast, which showed evidence of further lesions in my spine, which were older as they didn’t take up contrast. So after initially being told to stop thinking of MS and to get it out of my head, the chance of it being MS was low. I returned to my follow up appointment to have the bombshell broken that I have MS. Not what I was expecting! Been told I don’t qualify for DMD. Does anyone know when I would?

I currently have loss of sensation up to my waist, but no motor symptoms. Legs and abdomen often feel like they are wrapped in tight bandages. They seem very tight when I’m cold and when I’m hot they get very prickly. I don’t have any motor symptoms. Struggling with fatigue- if I do too much in one day, I seem to pay for it the next. Not quite worked out where my limits are yet.

I’m just wondering how long it took for people to return to work? I’m aware this is a ‘how long is a piece of string’ question! So just after personal experiences. I feel bad, as I’m able to do stuff day to day. But the thought of working on a busy ward is overwhelming and the thought of doing a 12 hour shift or nights, just feels impossible! My neurologist said not to return until my symptoms had gone, but they show no signs of budging yet, so how long is this going to be?! How long do you find the fatigue lasts for with a relapse? Or is this here for life now and i’m going to have to learn to deal with it?

If there are any doctors here with MS, then I’d love to hear from you. How do you make it work? Have you had to change anything since diagnosis.

Thank you!

hi clare

i noticed a while ago that there was a great number of people with ms working in the caring professions.

doctors, nurses, teachers and social workers.

i’m puzzled as to why you can’t start on a DMD.

maybe at some point it would be a good idea to get Access to Work involved.

they will fund things like taxis to and from work.

and things like special chairs to help support your posture.

also if you get Occupational Health involved in your workplace they will work with your employer to help them provide what is necessary under the DDA. (disability discrimination act 1995).

i understand that you may be reluctant to make waves of this kind but the legislation is there for people like you.

i really wish you well

carole x

i think the DDA 1995 was replaced(or incorporated into) by The Equality act 2010? www.equalityhumanrights.com are useful and has a helpline you can call.

I would think your union would be the most useful with the more specific info in how a doctors job could be affected and the “reasonable adjustments” you might be able to expect.

As Carole says you may be reluctant to make waves but i say at least be as well informed as possible to be ready to Surf whatever huge Swell comes along!

Good luck

Hi Clare. I am still not diagnosed with MS but I too lost the feeling in my body from the waist down on 2nd October. As I am writing this today 14th November quite a lot of the feeling has returned. There is a band around my knees and also my toes and feet are still numb. You as how long it might last and it’s difficult to say but just to give you some idea of how long mine has taken so far. I have a C6 lesion and three in my brain but primarily around the area where CSF is present. I would certainly involve an OT to help you look at your limits. I am currently working towards a simulated work day where I record each activity and how much energy it costs me. Like the others above have said tap into whatever support services are available to make your life and return to work easier. Good luck x

Thank you all.

Had a wonderful chat with my supervisor yesterday who was very supportive in making any changes I needed and also waiting to see occupational health.

I think its just going to be a case of trial and error and see how I feel on returning to work, and then making adjustments as necessary. It feels difficult at the moment to try and predict how things will go.

catwoman- I don’t really understand why I’m not eligible for DMDs either, will discuss this further when I’m next seen :slight_smile:

xx

Hi Claire,

I saw your post and just had to reply to you. I am not a doctor, but i am a chef- so i can sympathise with the busy 12 hour shifts! I have been feeling the same way about returning to work, i have not yet had an official diagnosis of MS. I am awaiting results from my Lumbar puncture. My spinal MRI showed inflammation that has been there for a while apparently, so I have been referred for another MRI, with dyes added this time.

I have been so scared to return to work as I am still experiencing the symptoms with no sign of them letting up. It has been 9 weeks now and I cannot feel my legs or feet and have numbness/ pins and needle sensations which are very uncomfortable. My fear is the stairs at work, slippy floors and hot ovens/pans/liquids ect. The fatigue is just unreal too. I feel so guilty for taking time off too. Have you taken steps to return to work yet, and if so how did it go for you?

Hope you are feeling better!

Hi Claire,

im not a doctor but I’m a police officer so busy and sometimes long shifts are the norm. I’ve only been out of hospital 10 days , after having IV steroids, so I’m really not looking to return to work yet and am signed off until mid February. At present I’m still incredibly weak, fatigued and my balance is very poor. Like you I don’t know if this will improve and how I will cope with working in the future. I’ve already spoken to occupational Health and will have a further telephone meeting with them on In January . I have an appointment with the MS specialist on 14th January and once that has happened my fate will be in the hands of the force medical advisor. Unfortunately if I can’t pass the fitness test ( beep test) I will never be operational again so medical retirement could be on the cards. That would be a while away but in the mean time I can do reduced hours, no shifts and be put in a position that requires office work. I have also got a federation rep on board for extra advice and support. I think the key is to communicate with the people responsible for your welfare at work.

I hope that you get to continue in your profession in some way

Julie x

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Hiya,

Sorry but it is Access to Work you should contact, Get support in work if you have a disability or health condition (Access to Work) - GOV.UK

Loads of help available; taxis to and from, helper doctor to do parts of the job you find difficult. Anyone with an idiom of sense would employ you on a shift pattern that would not make you ill; I would suggest no nights; no 12-hour shifts.

Under ‘reasonable adjustments’ called for employers to implement in the EA this I would class as reasonable. Surely it is important to employ you; with your knowledge on a day basis?

Just as a matter of interest I started some 44 years ago 3 months after marriage. Co-incidence I don’t know, but don’t go blaming getting married. whatever causes MS in us has been there for a good few years; the marriage may be the catalyst that brought it out, but it would have happened sooner or later.

Good luck and be a good doctor.

George

Hello Clare

Welcome to the forum. Sorry you’ve found yourself here.

It’s possible that the reason you don’t qualify for DMDs is that your MS doesn’t fit the guidelines.

The NICE guidelines for disease modifying drugs is based on this algorithm: https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2018/09/Treatment-Algorithm-for-Multiple-Sclerosis-Disease-modifying-Therapies.pdf#page4

Either your starting symptoms are not counted as evidence of a ‘clinically significant relapse’, or your disease is not seen as being in an ‘active’ phase.

Fatigue can be on ongoing symptom even after a relapse is over. Have a look at https://www.mstrust.org.uk/a-z/fatigue There are things you can do to manage your MS fatigue and drugs available that may help. The best drug is Modafinil but it’s not always possible to get it prescribed. Amantadine is often prescribed and it can be helpful for some people.

Best of luck

Sue