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New diagnosis 9 months ago - non stop complications

Hi I’m 22years of age and in August 2018 I suffered with numbness in my arms and upper body. I ignored this sturdily for a few weeks and just assumed it was due to me sleeping funny or something, but I then woke up one morning and couldn’t see out of my right eye. After going to hospital and undergoing mri and lumbar puncture it was confirmed ms. I was given a steroid drip which helped my optic neuritis recover and the numbness took around 3 months to go. I’d like to add that I never had any pain and I was working full time and felt generally fine. After this diagnosis my whole world has flipped - I haven’t been able to work, was started on tecfidera then due to being admitted to hospital around 5 times with severe stomach pain and vomitting blood I was taken off tecfidera. I have now started copaxone and seem to be doing okay however I now suffer with so much pain in my legs, arms, hands and back - sometimes I have to take morphine as I literally cannot move. I just want to know if this is common - my legs were never an issue with my first relapse. I suffer from terrible vertigo, dizziness, brain fog and constant fatigue - all symptoms that have come on in the past 9 months - I’m just wondering if this could be a missed relapse? Or is this just due to stress to my body. I have these symptoms pretty much every day and a lot of them are getting worse - especially the pain in my legs. I have asked for an mri as I’m concerned that due to all the complications and new symptoms which are worsening but my neuro said it wasn’t needed. I am feeling very alone at the moment as my ms nurse tells me to just “read the leaflet” which I have ’ but still have lots of questions! Hoping that me coming on here will shed some light! Any response is appreciated! X

Hello Jess

Aw poor you. As if it wasn’t bad enough to get the diagnosis of MS so young, you seem to have the worst care providers as well. I can’t imagine being new to MS, having had a horrible time with Tecfidera and being told another MRI is pointless and that you can ‘read a leaflet’. Gits.

You could still be relapsing even though you’re on Copaxone. If it isn’t working, ie if you are having lots of relapses, you could be moved onto a more effective DMD. But you’d need your neurologist to be on your side, and it doesn’t sound as though anyone (professional that is) is on your side.

If however, this is the aftereffects from your earlier relapse, it could still be the tailing off of the relapse symptoms. Remission from a relapse can a) take what seems like forever, and b) only end up partially remitted. You clearly had some immediate remission with the steroids, but some symptoms can go on and on. Equally, sometimes when you stop taking a drug (ie Tecfidera), you can have what’s known as a ‘rebound’ relapse. This is where your body has been protected from relapses and then the safety net is suddenly removed.

It’s quite common that a relapse takes such a long time to recover from that you don’t notice as things start to improve until one day you realise that you can bend your knee properly (say), or can feel your toes. Pain too could improve with time. But if it doesn’t, then you should see your neurologist again and ask quite clearly for help in dealing with it.

If however you feel like you are having constant relapses, regardless of the Copaxone, you should ask for a different disease modifying drug. Have you seen https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid You can see that some drugs are first line drugs, and others are second line. This means that if the first line drug just isn’t working for you, you should be able to qualify for another, more effective DMD.

The only way of getting to see if there are new relapses is to get a new MRI which will show different and new lesions and any current inflammatory activity.

For more help from your neurologist, I would write to him/her. Explain what new symptoms you’ve had, despite the Copaxone and ask for a repeat MRI and maybe a second line DMD if there is proven current disease activity. I suspect your age counts against you when talking to your medical professionals. You expect that you’re getting all the help that’s necessary and don’t always understand the disease process or the medical jargon they use. For someone like me, aged over 50, having had MS for 22 years and able to understand more of the medical language, I would probably get what I needed. And if I didn’t I would certainly write to the neurologist.

If you feel that you need further help that’s not forthcoming, you can always talk to the hospitals Patient Advice and Liaison Service (PALS) unit. Explain where you are having trouble and see if they can help.

Best of luck Jess, come back and let us know what’s happening with you. We may not be able to work miracles, but at least we can understand what you’re experiencing.

Sue

Hi Sue, Thanks so much for your reply! I met with my ms nurse today & I have been referred to Kings in LONDON and I am getting an MRI on Friday - thank goodness!! I’ve spent pretty much all my time researching all the DMT’s and other information that is available which has helped me a lot. I now have more knowledge to help others around me understand a bit more what MS is all about and how it can affect people. My MS nurse was pleased to hear of my upcoming MRI, and once I have the results of that hopefully I can know what’s going on a bit more. I’m also starting new pain medication - Pregabalin or Gabapentin which will hopefully help to manage my pain more!! I’ve been reading so much on this website and MS Trust also, and will continue to use the online community as it has been so reassuring reading everybody’s experiences! Thank you so much for your reply, it’s so lovely to hear from people who “get” everything a lot more!! Thank you Jess xx