I’m just trying to understand the types of MS. I want to know what I can do to get the best treatment, help, support for my 29 year old daughter. Almost 5 yrs ago my daughter was diagnosed with MS. In about 6 months time she went from walking with a cane to a walker. In about another 6 month time she was using a wheelchair and part time walker, until her legs would not move without help. She has been wheelchair bound, and needs help to even get into the chair, out of bed, use restroom for over 3 years. What kind of MS has these symptoms ?? Her Doctors have not given it a name. Just MS !! I get conflicting info on the Internet.
Hello Satir. You’re description is pretty much the same as my progression. I was diagnosed with ms three years ago, this month actually. Aged 55, I was told it was most likely relapsing/remitting ms. This is where there are periods of remission in between relapses. These could be be between months or years. After twelve months I had moved from crutch to walker, and using a wheelchair at times. Diagnosis was changed to primary progressive ms. There were no remissions. It was progressing steadily from the start. (Primary) I now only shuffle indoors with a walker and have a very weak right hand. I use a wheelchair for anything outdoors. There are no drugs or treatments for ppms, just things to help alleviate the pain, stiffness etc. I’m sorry your daughter has this at such a young age. Perhaps you could guide her here to the forum. It’s a good place to come and ask questions, chat or just read.
Thank You Poppy6488~ I will guide her to this forum. I don’t know if she will remember to use it, but I’ll keep asking her. You mentioned that there are no drugs or treatment for PPMS, I can’t remember the names of the drugs they have her on but, it sure is NOT working for her stiffness. I’m seeing her later today I will get a list of her meds and start researching. I believe that some of the things they have had her on has done more harm than good. I hope you have a good support system. And Thank You again
Good Satir. I firmly believe we are responsible for our own health and have to research, discuss and question everything. I hope your daughter can be assertive, (even with your accompaniment) when dealing with the medical team. They are obliged to listen to their patient. I’m prescribed Baclofen as a muscle relaxant. Sometimes my knees feel so tight it’s like they’re set in concrete. Calcium and vitamin d, I take a B12 supplement also. That’s about it for me I’m afraid. I’ve tried CBD paste, from reading good reports on here. Of no benefit for me I’m afraid. Best of luck and I hope we meet her on the forum.