Hello
Yes, it is a shock to be diagnosed. You have my sympathy. I’m assuming you have had some improvement from your initial symptoms in June. If so, it sounds as though you have the relapsing remitting variety of MS (RRMS). This means you’d expect to have ‘relapses’ or flares of symptoms. This would happen when your immune system becomes active and starts to attack your myelin (the substance that coats your nerves). The remitting part is when you recover, either completely or partially. The steroids you were given help to shorten the remittance time, they’re not a cure for MS or the relapse.
The fact that it’s taken so long since your initial relapse and you still have symptoms is, I’m afraid, typical. It can take many months. But there is still room and time for further improvement.
What I would expect to happen now is for you to be given the contact details of an MS nurse. An MS nurse can be a massive help in finding your way around the MS world. As Retrovirus said, you can also get reliable information from this site (see the About MS tab) and the MS Trust. For example https://www.mstrust.org.uk/about-ms/newly-diagnosed
We can also help with information about our own experiences. Just keep in mind that everyone’s MS is as individual as they are, there will probably be no one with exactly the same experience as you.
You will also no doubt be given some information about starting a disease modifying drug (DMD). These aim to reduce the number and severity of relapses. Again, they aren’t a cure, but should help you to manage relapses. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for information about the various drugs currently available. But be prepared to talk to an MS nurse about what is the best option for you.
It really is a massive shock when you are first diagnosed with MS. It’s a lifelong illness, but it really doesn’t have to change who you are, your dreams and hopes for the future. At the moment, you’re finding it impossible to do your job. Fatigue is a big part of the diagnosis, and you may find that working a 13 hour shift (really? 13 hours? That’s hard for someone without MS!) is beyond you and you need to talk to your employer about reasonable adjustments to your role. Or even consider a different job. But your first task is to get yourself sorted health wise. Then think about your work.
What many people find when first diagnosed is that they suffer badly from fatigue. Have a think about fatigue management - ways to stagger what you do to allow you to live your life. Have a look at https://www.mssociety.org.uk/about-ms/signs-and-symptoms/fatigue to see what you can do to manage your fatigue.
There may be other drugs that can help with your ongoing symptoms. For example, Amitriptyline can help with pins and needles. You could talk to your GP about that. It’s a drug best taken early evening. It can help you to sleep better, but taken too late in the evening can give you a kind of ‘hangover’ feeling the next day. Gabapentin should help too. Both drugs are aimed at helping with the different types of pain you get with MS.
Best of luck, keep coming here and ask whatever you need to know. Don’t forget though that we aren’t medical experts, we know only what we’ve experienced. Some of us have had MS for years (almost 24 for me!), and others for months just like you. Both old timers and newbies can help.
Sue