Struggling with new diagnosis

I was first referred to neuro in 2015 with non epileptic seizures and muscle spasms. They put it down to anxiety. In May this year, I started having more symptoms. I was fatigued, I was dropping things, couldn’t pop tablets, write, remember, I fell over, tingling/numb skin in my whole body, electric shock when looking down and much more. I hadn’t a brief stint in hospital in June where I had a lumbar puncture. 2 months ago, I had my first telephone appointment with a neurologist. He sent me off for an MRI and I had an appointment come through the post to go through resuls in October. The neurologist called me unexpected yesterday and explained that I have oligoclonal bands present in spinal fluid but not bloods and lesions in the cervical spinal cord. He had spoken to an MS specialist and they have diagnosed me with MS. I am not a candidate for steroid treatment apparently (did not explain why.) Just got to wait for the specialist and MS nurses to contact me now. I’m terrified. I suspected, but was denying that it could be MS. I’m fluctuating between tears and anger at the moment. I am a Care Manager in a residential care home and have been signed off since May. I spend 4-5 days in bed and the others I do what I have to do and suffer afterwards. I cannot see myself being able to do my job which I love. On Monday I happened to be alone (parents away in Carava) and I only had water until 10pm when my friend popped in after work to check on me. I didn’t have any food i could prepare or even pick at and there is no way I can lift the kettle on days like that, let alone cook. I’m 33 years old, have always been independent and now I’m having to rely on people for my basic needs, even getting off the toilet sometimes. I know people have it a lot worse than me. I’m not looking for sympathy. I think I just need to put it down. Due to covid, I’ve only had telephone calls, like many others. It just doesn’t feel real.

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Hi Kieron,

So sorry to hear about your situation - you sound like you’re having a rubbish time at the moment. I had to give up my job as a secondary school teacher last week 12 years after my diagnosis. It’s a sad time as you feel almost a sense of grief that you’ve lost your independence and purpose in many ways. I’m trying to be positive (I know it’s hard) but think of this as a time where you have to (and can) adapt to new circumstances.

Please tell your MS nurse how you’re feeling when they get in touch. They are some of the most helpful, but underestimated, medics in the trade.

Also, reaching out to others on forums like this is absolutely the right thing to do. Don’t be like me who tried to just bury my head in the sand for years and pretend nothing’s happening.

Very best wishes,

Janet xx

Hi Kieron,

I have also recently been diagnosed with RRMS and like you receiving a life changing diagnosis over the telephone was hell. It didn’t help that I actually received a call from an MS nurse before actually been given the formal diagnosis as I waiting about 5 weeks in getting the results of my lumber puncture. My GP actually advised me that my brain scan was suggesting MS but He did say he wasn’t a neurologist so I was still hoping that it might not be. I have been fortunate as my symtoms have been mild, numbness in my hand last July followed by pins and needles in my thighs and I was then referred to Neurology. I struggled on at work after the GP advised that I might have MS, I have been working from home since March otherwise I think I would have gone off sick as I was a bit of a wreck when MS was first suggested as you automatically think worse case scenario. When I received my formal diagnosis I did take some time off work as it was important for me to look after my own wellbeing without worrying about work. I was also fortunate that my MS Nurse referred me for counselling and I must say that has helped so much. Take the time off you need and all the support available to you, I work in HR and although I am now back at work following 6 weeks off sick, I returned on a phased return with reduced hours over a 4 week period.
I have had my first consultation with my neurologist following my diagnosis and I am about to start on medication as he recommended I consider the first line disease modifying medication, although this was over the phone the appointment went well. Have you had a consultation following your diagnosis?

The most important thing is you need to look after yourself.

Take care.