Hi guys 2 weeks ago i was admitted to a and e with a suspected stroke. Ct quickly ruled this out but mri showed lesions suggestive of MS. husband and i both floored. I had subsequent lumbar puncture and mri spine but still waiting results i was in hospital for a week and had 3 days of 1000mg iv steroids. I have since been discharged and await neuro follow up whuch will br at a different hospital to the one i was treated at as there is no neuro there. Im just so scared frightened and confused. Is this the new me? I stull have symptons which took me into hospital so is this it now or will things improve? Are tte lrsuins caused my anything else? Can anyone advise where is best to be seen in the midlands? Im a 46 year mom of two who just wants to go back to 2 weeks ago!!!
Aw. You have been walloped with the potential for something you were really unprepared for. Not that there’s a time when such a potential diagnosis comes any easier.
First of all, about 85% of people are diagnosed with relapsing remitting MS. This means that gradually you will completely or partially recover from the symptoms you have now. The steroids are supposed to help with that. RRMS means you have the potential for relapses. But there are now lots of disease modifying drugs to reduce relapses and their severity.
This is assuming that when you go back to the hospital for your results, you are in fact diagnosed with MS.
When you ask ‘is this the new me?’ The answer is no, the new you is the same as the old you, but possibly with a disease that in years to come could give you some difficulties.
Essentially, you now have to wait for your next appointment to find out if it is MS. At that point, you may want to find the next MS specialist close to you. You should also be put in contact with an MS nurse who should help with day to day issues.
And we’ll offer as much information and support as we are able.
Thanks Sue. Im just so emotional about everything at the moment. Theres never a good time for this type of news but it seems even harder to deal with with christmas approaching and two winderful children to attend to. My husband has been incredible but its hit him very hard too. Does anyone know what sort of what times there are after referral?
life has dealt you a crap hand.
however you have a strong marriage and your kids.
both you and your husband need time to let it sink in, really this is not a throw away comment.
there is still life to be lived.
bed time stories to be read and lots of mega cuddles to be had.
you have us lot here at your side.
Waiting times depend very much on the hospital, the type of referral (ie was it marked as urgent) and how busy that neurologist is. So it’s a bit of a piece of string question.
What you could do, is wait until the new year, then phone the hospital to which you’ve been referred if you’ve not had an appointment letter through. Just ask to speak to the neurology secretaries and see if they have the referral. Alternatively, speak to the appointments team and check with them. If you’re not sure where you’ve been referred, try asking at the hospital you were seen in, assuming you have the name of the doctor you saw there!
In terms of being extra emotional, the steroids do hammer your body and they can leave you feeling quite tearful. So it’s not just an emotional response, it’s physical too. But try not to get too worried about the potential for MS. It’s really not the end of the world. The drugs to prevent relapses are pretty good and many people go from diagnosis for years without another relapse. So with a little good luck, your life will not significantly change.
Sorry you are unwell, fingers crossed you will feel better soon. Referral time is a lottery. Do not be afraid of making a fuss, the quicker you know what you are dealing with the quicker you can start whatever you need to do. My advice is to build a support network of friends family and professionals as well as listening carefully to your body so you can learn the best way for you to deal with whatever is happening.
This is a good place for opinions and experiences from a wide range of people, it is also a place where you can rant and know that there are people who have an understanding of how you may be feeling.