I hope everyone is keeping well. I am new to the forum and MS community. I have just been diagnosed after enjoying really healthy life but now I am reduced to a total and utter emotional mess. I’m not coping at all.
My MRI with contrast showed inflammation of spinal cord and brain (little white splodges are called lesions I believe?). However, Neurologist, spooked by my reaction, forgot to tell me is my MS slow progressive or short and sharp bouts of the disease? Are there any tests for this? Neurologist really just left me with the diagnosis.
Progressive = no relapses, continuous worsening
Relapsing Remitting = periods of being OK interspersed with bouts of inflammation which can show up symptoms.
Many transition from RR to progressive, when it is known as secondary progressive. During the transition, people can get relapses but don’t return to their previous base state.
I recommend you read up on MS and get clear in your mind which symptoms match your condition - then you will be equipped to have meaningful conversations with your neurologist. Start with https://www.mssociety.org.uk/about-ms/types-of-ms
I was wondering if the fact that I’ve had different sensations and new ones coming frequently mean that it must have PPMS rather than RRMS? I have been progressing/evolving in 8 weeks 6 different symptoms existing together but showing up at different times.
Did you have a remission and if so how long on average did you have to wait for symptoms to go away?
I have just been diagnosed so I don’t understand if my rather constant feeling poorly mean I will not relapse just continue like this?
Best way to find out is to contact your Neurologist’s office and ask. I’m sure they are used to people getting in touch to clarify which type of MS they have after the appointment - Many people hear MS and blank out everything else, and end up calling to get the full diagnosis.
Hi Kasia,
Sorry to hear you don’t feel that you are coping well, you will be stronger than you realise, and I hope that once you get all the information you need, you will know what you are dealing with and take back (as much) control as you can.
My journey started in 2020 with a nasty fall, two weeks later I was out shopping and my right leg just stopped. It took a while for it to move again and this scenario kept repeating! Long story short, MRI’s Lumbar Puncture etc etc later, I was informed by my neurologist in April 21 that I had MS. Such a shock for me as I had no symptoms or issues prior to the fall. For me, (looking back), I think he decided to let me absorb the news and didn’t bombard me with more information at that stage. As others have said, once MS was mentioned I just shut off.
I had a follow up MRI and conversation in September 2021 when he confirmed PPMS. I feel quite fortunate that I wasn’t waiting years for a formal diagnosis. I don’t like that I have this, but I get so much comfort knowing that my peers on this forum are there, giving us supportive and guidance. My MS Nursing team are amazing and hopefully you have access to these angels.
I wish you all the best.
Hi Kasia. Not sure if this helps but I had a relapse (a 4th one of its kind) & was then given a diagnosis, then within 1.5/2 months after those symptoms going away I had ANOTHER relapse but completely different.
I have RRMS so I don’t think if you are having relapses quickly and different symptoms it necessarily means it’s the progressive type right away x
Hi im new to this page too but i am going through the same thing, mine started 10th April with my legs and since then its just been new sensation after another. I have my first consult with my neurologist on thursday
2 months on, have you done more research, are you seeing your diagnosis & symptoms more clearly? Hopefully you’ve had more contact with your MS team - have they offered any more answers?
