hello, i am asking for any help anybody can give me, i feeling in a state of shock and am confused and scared. I am 57, married, and in a year have gone from a healthy active woman with a full time job, to someone who has been on sick pay since April, walking with the aid of two elbow crutches, and unable to do hardly any housework, and worring the life out of my family. Yesterday i saw my neuro. i convinced myself, or at least tried to, that he would say that there was nothing wrong and refer me to another department for more tests. Instead i got a tentative ms diagnosis, which i sort of half expected. What has really thrown me were the words, aggressive, chemotherapy type drugs, and blood being sent to Copenhagen. I really dont know what to think, what sort of ms do i have, will i end up in a wheelchair. I know the best people to help at the moment are those who have been through this, i dont want to worry my husband, he is in the dark as much as me. I am going for another mri and lp so until they are done i am on my own as such. Any info would be very welcome. Lots of love to all out there lorraine x x x x
Sorry to hear you’ve been having such a horrible time, i’m still waiting to see the neurologist but i’ll try and answer what i can, and i’m sure someone who knows more will correct me if i’m wrong
Firstly try not to stress too much (easier said than done i know), and for heavens sake don’t worry about the house work! what i have gleaned from here is that ms is so unpredicatable that putting time scales on it is very difficult. And even if worse does to come worse you will cope, just read about on here - there are people living full lives.
As to the chemotherapy this generally isn’t the same as chemotherapy given for cancer, its generally a low dose which doesn’t produce anywhere near the same side effects, its often used to try and slow the relapse rate so that you can try the disease modifying ones. Theres lots of info on the ms website about this.
Its great that they are taking you seriously and have a plan to try and get on top of this,
Take care of yourself
The blood being sent to Copenhagen is normal for those with MS. You have to be tested for something (What I can’t remember - someone more knowledgable will fill in the gaps!), as if you have it then you can’t take one of the most effective ms medications, due to potential complications. Essentially they’re just checking to make sure they put you on the right meds.
They’re obviously taking care of you, but no matter what treatment you receive it’ll take some time for this to sink in. Take your time and don’t worry about small things such as housework! (Seriously, you should see my house. Complete shambles!)
I think I remember the blood test in Copenhagen is for the JC virus to check that it is safe to administer Tysabri (Natalizumab) because a rare side effect is PML if there has been an infection by JC virus.
There we go - I knew someone would be able to fill in the details! Thanks Jon!
I just wanted you to know that I am thinking of you, and to let you know that there are many people on this site who will identify with your image of what a difference a year has made to your life. I imagine it is awful to get a diagnosis (I am undiagnosed) and yet you now have a name to put to your symptoms.
There are many brilliantly informed people on here who will no doubt tell you what happens next for you. Good luck with it all Lorraine and please let us know how you are doing.
Hello from me aswell.
I guess your mind is all over the place at the moment.
If they are thinking of Tysabri then that is the best treatment available at the moment research wise.
What you will find is that the process of getting a definate diagnosis,and then starting treatment is rarely quick, and you may still wait long periods waiting for appointments and then things going to the funding panel to start dmds.
Please keep you internet searches to the ms society or trust sites to avoid the crackpots. There is a huge amount of trustworthy info on there,but remember everyones ms is unique to them and no two people follow the same path.
As Paula says the people on here can help support you all the way along your journey
I’m undiagnosed so can’t tell you much about the journey ahead but wanted to give you my support. As the others have said - I’m sure this has come a s a big shock and you need time to come to terms with the news as well as your family. Take things slowly and certainly don’t google too much and worry about the what ifs. I’m not saying life with MS is perfect but there are many people on here who have accomplished great things and will tell you that having some form of normal life is possible. Please don’t panic reading all the MS symptoms - not everyone gets them all and the severity of them avries from person to person. MS is a very individual disease.
Good luck on your journey ahead and know that you’re not alone, there are many others going through the same and here to support you.
Hi Lorraine and (((hugs))) from me too,
You’re in a tough place at the moment, a lot of which is the uncertainty and the fear of the unknown. Everyone here understands how you’re feeling, just knowing that you’re not alone can be a massive help though. We all try to support each other.
MS is extremely variable, not just from person to person but for each of us as individuals too. A firm diagnosis will give you access to treatments and meds, these alone can make a huge difference, plus there are many services that will be available to you too.
It is a very frightening time and whilst it’s easy to say ‘don’t worry’ it’s much harder to actually do. As others have said stick to official websites - don’t get sucked into any wild claims of cures - sadly there are many out there who try to make money out of people who are searching for help.
Hopefully the mri and lp will give you some concrete answers one way or the other. Until then, look after you and take one day at a time.
How are you today?
hello to you all. i think i have my head around things at the moment. its so good to have messages from total strangers who care and understand how i feel. i have got a brilliant hubby who is being even more supportive but it is hard to talk to him and tell him my fears i dont want to burdon him with feelings and thoughts he cant understand. so i think this sight is going to be a lifeline for me. so once again thank you all for taking time to send me messages, lots of love and hugs for everyone. love lorraine x x x x x