Need help feel so confused???!
Ok I really need some help I have just been diagnosed and I need to hear from some people about there experiences and to see if anyone has had one similar to mine
it all started on October 8 I got a sudden sharp pain in my head and long story short on October 12 after 2 hospital visits and 1 doctor visit they finally took me serious and kept me in. I got dizziness and severe head pain and face muscle loss on right side I couldn't taste things and loss of balance I looked like I had a stroke. It was a very severe attack. Especially for someone who didn't even know they had ms.
so a few months later I was disavowed with ms. 6 months exactly after I got 5 days of tingling very slightly in my arm wer I had it before except it was no wer near intense I could hardly recognise it. However I went to the hospital because my wife made me and a few days prior to this I had my MRI scan because I was due my 6 month check up and it found out that I had 2 New lesions or my brain. So the nurse and the hospital then said because it lasted less than a week it wouldn't be classed as a attack and said people go there whole life's with flare ups because of the lesions scared the brain it s just letting you know there still there ect.
After that I got diagnosed with relapsing remitting ms by another doctor who then told me that having two attacks in the first year isn't a good sign and he wants to put me on tysbari. I'm just abit concerned I'm getting my first course so tysbari on Monday. But apart from the first major attack and that tiny flare up that didn't even bother me I haven't had nothing at all to say I suffer with ms. And now I have to start tysbari I'm scared that this is going to make me start getting things tk make me feel like I have ms ? Dos this make any sense. I'm completely fine without it and I'm scared if it's going to make my body prone to it. I really need some advice and hope someone can help me on this and help me calm down or whatever I so sorry but I'm so confused. My brother in law specialises in ms and he recons I shouldn't have been diagnosed so quickly ? Please share your stories and help me know if anyone has gone through something like this before. Thank you so much
it all started on October 8 I got a sudden sharp pain in my head and long story short on October 12 after 2 hospital visits and 1 doctor visit they finally took me serious and kept me in. I got dizziness and severe head pain and face muscle loss on right side I couldn't taste things and loss of balance I looked like I had a stroke. It was a very severe attack. Especially for someone who didn't even know they had ms.
so a few months later I was disavowed with ms. 6 months exactly after I got 5 days of tingling very slightly in my arm wer I had it before except it was no wer near intense I could hardly recognise it. However I went to the hospital because my wife made me and a few days prior to this I had my MRI scan because I was due my 6 month check up and it found out that I had 2 New lesions or my brain. So the nurse and the hospital then said because it lasted less than a week it wouldn't be classed as a attack and said people go there whole life's with flare ups because of the lesions scared the brain it s just letting you know there still there ect.
After that I got diagnosed with relapsing remitting ms by another doctor who then told me that having two attacks in the first year isn't a good sign and he wants to put me on tysbari. I'm just abit concerned I'm getting my first course so tysbari on Monday. But apart from the first major attack and that tiny flare up that didn't even bother me I haven't had nothing at all to say I suffer with ms. And now I have to start tysbari I'm scared that this is going to make me start getting things tk make me feel like I have ms ? Dos this make any sense. I'm completely fine without it and I'm scared if it's going to make my body prone to it. I really need some advice and hope someone can help me on this and help me calm down or whatever I so sorry but I'm so confused. My brother in law specialises in ms and he recons I shouldn't have been diagnosed so quickly ? Please share your stories and help me know if anyone has gone through something like this before. Thank you so much
Welcome to the forum, and I'm sorry to hear of your diagnosis.
Sometimes, it's easier to post in Everyday Living, just a little bit more people up there to answer you.
I'm assuming when you use the word 'doctor' you are meaning a neurologist. Some people have been diagnosed (dx) very quickly with MS when there has been concrete evidence that it is MS. Having such bad attacks, your neurologist feels it would benefit you to start on treatment quickly.
My dx took a very long time and I am not on tysabri, so my experience is different. Have you been given some information on tysabri or any literature about MS? There are some publications you can order on here or you can read about them online.
Hopefully others can answer your questions. Let us know how you get on.
J
my names Danielle. In January I had symtoms
of a stroke. For weeks if been having word finding problems and kept saying the wrong word when I knew what I wanted to say. At a job interview I kept stuttering and on writing an essay- it made no sense! Every word was a random word I didn't mean to write! Was getting frustrated which made it worst and a few hours later I could hardly speak!
Days later (after various tests) I had an MRI . Huge lesion. Was demyelination. What also showed was old plaques. I was diagnosed with Ms after a lumbar puncture and a repeat MRI with contrast. In June I relapsed ( different symptoms altogether)and was advised to start alemtuzumab. Aka campath. I looked at tysabri. But was told this was the best option for me. I'm seeing consultant this week to discuss a plan.
So similar to you. It's all been very quick with little time to digest anything!
Your not alone
yes it's a horror when it hits you out of the blue but you must not give in to the darkness,
your children will be fine with it because they accept things better than us adults.
don't try to do too much. its ok to let the housework slide.
better to have quality time for cuddles with your babes.
ms is so variable. no two people have the same experience.
it's a complete bitch but you are still the person you have always been so practice those smile muscles!
see your gp for prescription meds to help with your symptoms.
maybe an anti depressant? my gp put me on citalopram before my diagnosis because he knew that the diagnosis process was stressful.
its still early days so your emotions will be all over the place.
be kind to yourself - really try an act of kindness to yourself every day!
carole x