I’ve not posted since last April but after 2 (now labled) relapse and loads more tests I got my diagnosis just before Christmas. My symptoms started nearly a year ago and it feels like it has taken forever to diagnose something I already suspected I had. I guess I’m lucky in the sense that it got diagnosed so quickly and at a very early stage. My first MRI back in January didn’t show anything, one 8 days later showed the inflammation in my spinal cord. Each time I had another MRI something else showed up and my relapse symptoms got, how shall I put it, more aggressive. They came on faster and previous new symptoms would show up sooner. I think I must of surprised my consultant because when he finally told me and my husband it felt like a weight had been lifted off my shoulders. I have a fantastic support group around me of friends and family and this forum. I’m a positive person and like to think that I will embrace this but I do worry about the impact it will have on my life. I’m waiting to see the nurse (next week) to sort out my DMT but my fear is related to getting everything manage as best I can. It worries me that my next relapse could should more lesions or come on sooner. I know everyone is different but I think the worry is related to how my family copes, seeing me struggling to walk or stay up right (effects my balance), going though another course of IV steroids. I’m I wrong for wanted to get back to the life I had before? Whist managing what i have now?
That feeling of relief upon getting a diagnosis is very common. I know I hadn’t been worried about MS for months or years when I was diagnosed (no internet/Dr Google then), but for a brief while I’d been convinced it was MS and getting a doctor (lovely kind man) ask me ‘what do you think’, ‘MS’ I answered, ‘so do I’. That was before the MRI which confirmed it.
The relief often comes through having a label to hang your symptoms on. You can tell people you have severe fatigue caused by MS, or stiffness, or cognitive symptoms, or pain, or whatever is taking its toll on you at the time. It’s a big help to have a recognised disease.
You can also get access to drugs that aim to prevent relapses (DMDs see https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for more info on what’s available), and drugs that help with symptoms, whether your main symptoms are pain, spasticity, fatigue, bladder issues.
And access to an MS nurse, which many people have in the diagnosis phase, but too many don’t. There just aren’t enough nurses for the number of potential patients.
I understand that feeling of relief well.
Once the relief phase has gone, you start getting down to how you deal with the diagnosis, then can come panic, like ‘How the *#@%" do I cope with this? What drugs am I going to take? What about side effects? Aaarrrghhhh!’ And then utter rage, of the ‘Its not f’ing fair, why me?’ kind.
We will be here to help. Just let us know what you need and how much help you need to understand the diagnosis and the various phases that you’ll go through.
Best of luck. Sue
Hi Rugrow, glad to hear you have your diagnosis…it
s so worrying when you don't know what youre up against, isn
t it? I have just re-joined the gang after a 7 year absence. Ive been seeking a firm diagnosis for over 20 years! I got that last month. I have Primary Progressive Spinal MS…no demylination in my brain…just on my cervical spine area. I hope you can get some meds to help. Best wishes. Pollx
Hi Sue, Thank for taking the time to reply to me. I’m seeing the ms nurse next week to discuss what DMT they think will best suit me. I’ve had to have a load more tests including another lumper puncher and I’m waiting on a chest and pelvis CT. I think they think I have something else wrong. I’ve gone from ground zero to 100 in 10 months. I really appreciate this forum and having someone to talk to that understand what you are going though. Family and friends are great but ita hard for them to put themselves in your shoes. Thank you again
Thank you Pollx for taking the time to reply. It’s nice to know someone has read your post and took their time to reply. I hope you are getting the help to manage your MS.
You give me hope.
I hate saying WELCOME, who wants to be on an MS forum, but boy the relief when we finally get told after years its MS is overwhelming, and i cried not because i was scared but RELIVED as finally perhaps people would start to take me seriously.
I am glad you can have some peace now and plan for the future. I am on a healthy diet at the moment and trying to occupy my brain.
I am walking as much as i can push myself.
relief from being taken seriously for me was what actualy made me feel better. xxx