My 30 year old daughter was finally diagnosed with MS in July though she’s been under her neurologist & MS nurse for almost 2years. Nothing is moving on at all. She is married with 2 small children. She doesn’t cope, she’s just existing. Her neurologist just keeps saying we’ll see how you are in 6 months. She can barely put one foot in front of the other. She fell & cut her head open recently yet still there is no urgency. Her husband has been signed off sick as he’s struggling to cope. We are getting desperate. Can anyone help at all?
I am sorry to hear that your daughter is having such a tough time. I understand the energy level and fatigue. You and she must get more support from the nurse and doctor / neurologist or try to change the team. I did eventually pay twice for a private neuro consultation. First time was a total waste, I saw the same useless guy a bit quicker and for longer with the option for a coffee. However the second time I found a brilliant team who I trust completely. He worked out that I can not afford private treatment so he referred me to his NHS practice and I now get proper support even though I have to travel to get it. My other comment would be that having fallen and having two small children you should find the number of your/her local council or social services and use terms like “vulnerable adult” and “risky conditions” for the children. Do not be afraid to say that you are about to call the TV / papers or start a Facebook campaign, even write to your MP. It can be strange how things start to happen when people wish to avoid adverse publicity. You might get labelled as difficult but who cares if you start getting a bit of support.
Wishing you both all the best Mick
Mick, many thanks for your valuable advice. Since I last posted my husband has 'phoned the nurse (without my daughter’s knowledge) and low and behold things are finally beginning to progress. I told my husband about your response and he said that he had already had his own thoughts about contacting the media so that is an option should things stall again. I think you need to be very pushy which perhaps my daughter has yet to learn. My husband would like to accompany her to appointments but she is adamant that it’s just her and her husband. It’s a long and bumpy road but I hope that one day she will get the treatment that she deserves and be able to live a relatively normal life again.
Many thanks again,
You are very welcome. I am so NON confrontational that I feel guilty about being pushy. At one point I thought I was going blind and sat on the consultants desk until he came to speak with me. I have learned that being assertive is not the same as being rude or bad mannered.
Good luck Mick