Good grief Nina, you were so young when you started with ms. That must have been very difficult. My daughter was tested at 17 and part of me didn’t want her to have the LP as I didn’t want that hanging over her for life. The only reason I went ahead was because the drugs have come such a long way for RR. You’re a very brave lady, hats off to you.
Cath x
Darren,
So glad you have come onto this forum. It really can change people’s views, give them hope etc. Great people on here.
My Auntie also has MS. She has her disease, I have mine. No two people with this problem have the same disease. We have all been told that many times by the “boffs”.
Please try to put all your negative thoughts about your Uncle and his death into a space at the back of your head. Easier said than done I know but it can be dome with perserverance. Unfortnately his path was a serious one. We are all different. I have PPMS too.
Reach out for the help you can, including on here. People on here often have an answer that the docs have not got. Simpy because we live with the problem and have worked our own ways out how to get through them, over them, around them, but onto the other side of the problem.
Sorry for the tyoing. I am very tired (look at the time!!). Been a long hot day and to cap it all I was bitten twice this morning on th leg by a wasp, the leg has blown up like a balloon and I can’t sleep. Hence sitting at the kitchen table at this ungodlhy hour!!
Hang in there Darren, the mind set and the depression can lift, you just have to give it a little shove now and then.
Night, morning whatever the hell it is!
Anne
Cath I didn’t have my dx then but my neuro told me that without doubt that was when it started, I had Le Hermittes and optic neuritis and the start of my leg problems, pain trouble not mobility issues.
I was a nervy child so of course at the time it was all put down to nerves. Then the next lot of problems were considered to be gynie ! In retrospect I’m glad I didn’t know because at that time there was nothing to help, and way back then a hot bath was th way they diagnosed and at that time I could tolerate heat. I used to lie out in the sun covered in coconut oil until I fried. No such thing as SP F cream then!
When we thought my grandson might have MS I knew it would be better for us to know. He was only nine when the symptoms started and my neuro said to me at the time that with the new drugs available he would probably never get as bad as I am now, which was a comfort.
Luckily it seems he doesn’t have MS but ME and whilst it’s horrible to see him suffer so at his age at least we know that unlike MS there is every chance that it will go…we pray so anyway !
thanks so much for the hats off but you know I’m no different or braver than any of us!
Hats off to all of us!
Nina xx