Hi, my daughter had a really good day yesterday and even went to beach with friends. Today she has woken up very tired (expected) and very sore. She feels as if her ribs are bruised, along her shoulders and her legs. Is this normal after doing something a little bit more energetic than just sitting about the house which she has been doing for the last week due to relapse? Linda x
Hi my son who’s 26 has been diagnosed with MS this week, I am devastated I am trying to stay positive but every time he sneezes yawns and walks like a drunken man not to mention the optical neuritis and sore back I’m in floods of tears not in front of him but like other parents on here I want to scream, he hasn’t been to see the MS specialist soon and have another MRI on his spine to check it’s not spread my beautiful son who’s been suffering with symptoms for months was told by drs each time he went that he needed to join a gym for the back pain to strengthen his back it took seeing another dr who noticed his shaking and pale retina he sent him to see an optalamist who said it was optical neuritis when you look up that on Google MS is usually the cause, he was then sent for a brain MRI the appointment with the neurologist was Monday as soon as he said it was MS my husband and I cried, my brave son said thank you I knew it was, thank you for confirming it. We feel so sad people keep saying you can live with it but obviously have to adapt, I think the hardest part is not knowing how bad it will be x
Hi Gina,
I know how you feel. It’s been just over 3 years since my daughter’s diagnosis and although sometimes the shock of diagnosis has got easier to deal with, sometimes it still hits us like a tonne of bricks.
You and your son and family can learn to live with it, adapt and make allowances depending on how your son is doing and feeling. Although Rachael has gotten used to having it, she still cannot really accept the diagnosis. She appeared to be doing really well and coping but then something happens and she is thrown back to how she felt when first diagnosed. Only this week she is back on amiltriptalyne (?) and being referred to a psychologist as she is really struggling mentally. She is on Tysabri after a failed attempt with Rebif. What meds has your son being recommended to try? In my humble opinion do not go soft at the early stage, hit it with the strongest meds possible as soon as possible. Arm yourself with as much information as possible, it does not keep the demons that visit away but it may help when talking to professionals about treatments and symptoms.
My daughter is starting her 2nd year of college and is freaking out as she feels she will fail, cannot handle the course work as cognitively she is a little compromised at the moment. She forgets things, cannot word find, cannot always follow simple steps and when this happens she gets embarrassed and this makes the symptoms worse and then she stutters and gets upset. She has also cried every day for a month, she gets so emotional about everything. College knows she has MS and they are willing to help her, she just has to tell them what help she needs but she is too embarrassed to ask for this help.
Even after 3 years the worst part is still not knowing what will happen to her. She was doing so well for so long, no relapses for over 2 years then while on holiday in June she had a pseudo relapse, then another a month ago. Hospital don’t seem too concerned and not thinking her meds are no longer working but it’s at the back, side and front of my mind. It is scary to know that she could one day waken up blind, unable to walk and confused and then recover to knowing that one day she may not recover.
I wish there was words I could say to make this easier for you to deal with.
Good luck and please let me know how you and your son get on.
Linda x