Hi guys, sorry to keep coming on here with nothing good to say. Daughter started Tysabri yesterday, before leaving house when she had just gotten up she was feeling very poorly, sick and dizzy. We went and got Tysabri and she cried most of the way there as she just felt so ill but once we were in and she was sitting down she felt ok. When we were leaving she started to feel really dizzy and sick again, cried all the way home. Got her home and into bed where she has stayed and is still there. Came down this moring to use toilet and nearly passed out, she has vertigo again. Only feels ok if she is lying down and does not move her head. Phoned doctors on call and spoke to a really nice nurse who advised a doctor came out to see her, so waiting on them coming and hoping they can give her something to allow her to get out of bed. Lx
I had to reply as i can see this from both sides-yours and your daughters. I feel so much for you both. I’m having a big relapse now and am just out of hospital. I have never felt so unwell in my life. Weak, dizzy, vision very poor and terrible pain… The pain is awful. I was protecting my family up to this but now I need them. My poor Mum is having to help alot and take on alot for me. I feel guilty. She has dealt with enough in her life without adding this. I in some way can understand how your daughter feels and i can see how things must be so hard for you too. I hope the tysabri helps her. She has been through so much for someone so young. It’s not fair. Lets hope things can only improve for your daughter and yourself. I hope the doctor can give her something to feel better. I had the doctor too and hoping the pain relief will help me soon. Take care and special wishes for your little girl xxx
Hiya. Im sorry shes feeling soo bad, vertigo is horrid!!! I hope it goes soon. How did her first infusion go? I know you have been having a troubling time about tysabri and the decision for her to have it, hopefully she will start improving quickly. I might be switching to it soon as rebif isnt working for me. Take care Kate x x
Hi, thanks for good wishes. Her infusion went fine, no major traumas other than finding a vein. Took a couple of jabs but they finally found one. It did not hurt going in time passed quite quicky, there for about 2 hours all in. Half an hour to set up and take notes, an hour for the infusion, half an hour for the flush through at the end. Some people report feeling great after the first infusion but as R is in relapse I don’t expect her to feel any different, been advised it can take up to 6 infusions before you start to feel any different. I am starting to look really tired apparently, quite a few people have commented this week and even R said to me today that she hates seeing me so tired and shakey while doing stuff. Did not realise she noticed and I feel guilty for allowing her to see me so down. I need to be her safe place to fall and I can’t fall apart. I don’t want her to feel guilty about how this is affecting me, she has enough to deal with. Her breathing is fine, no hyperventilating. L x
severe vertigo can be a really bad symptom of ms, i had it really bad and couldnt get out of bed for months,i couldnt even get up to go to the toilet.if you have never had it that bad,you just cant undertsnad how ill it makes you feel,i wanted to die i felt that bad,mine is caused by a brain stem lesion,there was nothing i could take to make it any better,i just had to wait for it to pass,really feel for your daughter,its a nightmare situation.
Hi J, she has a significant lesion on her spinal column, is that the same as brain stem? Lx
I can totally understand how R feels with the vertigo it is one of my most frequent symptoms. Unfortunately staying in bed is the best option when it is really bad, I retreat to my bed when it starts if I can or in some cases I have had to lie down on the floor as couldn’t get anywhere else. I hope the infusions start to help soon. Sending you both hugs Barney
Daughter has ended up back in hospital, 2 different doctors out, one last night gave her anti sickness tabs with no effect. Second one out this evening gave her a jab with no effect so phoned docs on call and they said to take her to a and e. Admitted and put on drip. Lx
sorry to hear your daughters had to be admitted to hospital,i hope she gets a lot better soon.
Linda, I do feel for you hun - its awful that you seem to be having no luck at all with this horrible disease.
Let us know when you get a minute whats been happening. Take care of yourself too. Hugs for you all
Hi guys, looks like they are keeping her another night. At the moment anyway, things may change. She is still on fluids but allowed to eat and drink again. So far no food since Sat morning. Doctors are wondering if the Tysabri caused the vertigo. I don’t think it did as she was feeling dizzy and sick before infusion. I think it is a lesion that is causing it, they want to speak to her neuro to check. Fingers crossed she gets home soon. Lx
Sending you both hugs!!!
You guys are in my thoughts daily!!! I do wish there was soething i could do to help and make R better!!!
Just know we are all for you!!!
Hope she gets home soon
Kate x x xx
Sending my love and best wishes xxxx
That is her home safe and sound. Was sick on journey home, then sick for about half an hour after in. Think it was just the journey, as movement and vertigo don’t really mix. Tucked up in bed, telly on, phone at hand, good times. Lx
Just to echo Jen, I’m glad she’s home and comfortable. Fingers crossed for some good days cause I think you have had enough of the bad.
Lots of hugs
pleased R is home,really feel for the girl i know how bad you feel when you have severe vertigo,i wouldnt with it on my worst enemy,have they given her anyhting to try ease it at all.
Hi J, they have given her something for it but I am waiting on MS nurse to get back to me to check she can take it with the other drugs she is on. Lx
She must have had every symptom on the list now, poor girl. I’ve had the odd dizzy spell and had one horrid day with it lasting for a full day. She has my sympathy, I think that is the worst one as you can’t do anything with vertigo except lay in bed. Even turning over made me feel sick.
I really hope the Tysabri does the trick for her. I’ve heard such good things about it for severe MS, it gives people their lives back. For now, I’m glad she is home and tucked up with mum looking after her.
Oh Linda, I’m so glad she’s home, talk about in the wars, you must have been losing your mind with worry
Take care and hugs to you both
Hey Linda, I’m glad she is home. Sending you hugs Barney