Just logged onto NHS app and new update there.
I went for a spine MRI this week on Tuesday.
New letter dated the next day.
They have found a restricted diffusion lesion in spine.
Saying they can now prove space but not sure about time.
So i need to have a lumbar puncture.
Not looking forward to that?
I have had 4 c sestions so i have had spinal blocks
Anybody know if they are similar?
Gutted this morning, i could even cry not like me
Hi Teddy,
I had my LP this year in April time. It was fine. I didn’t feel very much at all. I had heard that hydration is important and a good dose of caffeine or full fat coke after the procedure can help with any after effects like headaches etc. I made sure I was fully hydrated and treated myself to a large Costa afterwards.
You’ll be fine. Try to remain positive. Being negative is a very wasted energy. Xxx
Thank you for your reply. I will try to stay calm and postive.
Hi Teddy, the thought of having this procedure done is scary but only because you have time to think about it. I agree with Foxy that negativity is wasted energy. Keep positive and focus on something you will enjoy after. It is not a long procedure and will be over before you know it. Take care. Dandy
I am not frightened of having the procedure.
More frightened if i will be ok after. Also worried about having medicine if i do have ms.
I am due to start my first DMT a week tomorrow and I am excited about it! I’d go and have it tomorrow if it were an option. I will be starting Tysabri. It’s not normally a First, but they consider mine very active so want to put a stop on it.
Obviously in an ideal world, None of us would have MS, we’d all be super healthy and treatments would not be needed. But it’s not an ideal world. And we do have MS. So we have to deal with that as best we can.
My mind set is that I am going to throw myself into anything that will hold it off as long as possible and give me the best possible chance of a normal life. And I’m going to be positive about it. And I’m going to try to keep in mind that there are people out there, possibly even reading this right now, who are not eligible for any treatments now or in the future. So I’m grateful that it is available to me.
I also owe it to my Mum. She was diagnosed in the 90s when there wasn’t any treatments available except steroids and there was also very little understanding or information. She would be happy to see me getting the treatments that were not invented during her time.
It’s all very hard to get your head around and I fully appreciate that. You will get your head around it in time and find a way at to move forward. Have faith in yourself
X
Well, that is excellent news (within constraints, as you say.)
I was dx in 1999, just as the first wave of injectable DMDs were becoming available and I was quickly put in one. My MS was also aggressive from the start, and unfortunately Tysabri had not been invented and I did not start Tysabri until a decade later when my first line treatment had failed. Tysabri has has been a wonderful drug for me,
The damage done in the couple of years pre-Tysabri cannot be undone, alas. So I am particularly glad to hear that you are going for the heavy guns before MS does you too much harm. I am very happy that you clearly have a great medical team behind you.
Good luck with your treatment. Tysabri really can stop even aggressive RRMS in its tracks. I wish it had been there in time to help your mother.
Thanks Alison. I wish it had been available for my mum too, but I know she’d be super happy for me.
And I’m sorry TeddyBear. Totally not my intention to make your post about me. I was just trying to say that there is light at the end of the tunnel, but sometimes you have to look for it.
You will be ok and you will get through this. In time, as the news sinks in and you get over the initial hurdles, it will get easier to deal with. Give yourself time.
Xx
No problem at all Foxy.
I am just very thankful for the support I have received here.
My family are great too but here people really understand.
I received another letter today from the consultant and i miss understood her last letter. I thought she was talking about the spine mri results that i had on the 25 oct.
The letter was talking about an unclear lesion but in fact, she was talking about one of my brain lesions!!
So no news yet from the spine mri. !!!