Mom needs help

Hi Everyone
I am new to this and I am posting here as my daughter is just going through the process of getting a diagnosis. She is only 32 years old and has a 7 year old and an 8 month old baby. As a mum all I want to do is fix things, but this is something that I can’t fix which breaks my heart. My daughter has probably been going down hill for I would say the last 7 years, very slowly. Her gait gradually got worse, and I remember thinking that maybe this was something neurological. Long story short, things came to a head in July just after having her baby where she could not raise her leg to get up the stairs. And since then she is having to sleep downstairs and is basically living in a chair. She has spasticity in her legs and has spasms. Her mobility is totally non existent. She uses a walker to aid her when trying to move, but she looks like she has a drop foot and although she knows that she wants to walk her brain isn’t letting her. She has had a brain scan which is showing numerous brain lesions etc, she has a spinal MRI with contrast and a Lumbar Puncture and blood tests, but this has all taken so long. She now has an appointment, at last, but this isn’t until mid April. In the mean time she is at home, trying to make the best of the situation, and like I say it breaks my heart to see her like this, and although I do support her I get frustrated in how long things take to get done. I have tried to ask for a wheelchair for her, I have asked three times now and still I haven’t had any response from her GP, as she needs to be referred to Wheelchair Services and apparently this can only be done through her GP. She isn’t contacted either by her GP who I am sure should be aware of what is going on, and her lack of mobility. I just don’t feel like she is getting any help from anyone. I am not sure whether she has to wait for a written diagnosis before we can start to get any help for her, and what benefits she is able to claim. Although the consultants letter that we received did state that she was presenting with Primary Progressive MS, but this wasn’t a diagnosis hence the appointment in April to see the MS specialist Centre in Seacroft in Leeds. I am trying to be positive for her and my grandchildren. And I try and give her all the support that she needs, but it does take it’s toll and I can only do so much. She is a fantastic mum, and she says to me that she copes because she has to, and her children are her priority, but I honestly don’t know how I would be able to cope sitting in a chair 24 hours a day 7 days a week. I hope that there is some kind of light at the end of the tunnel and that she can receive some medication, that even if it doesn’t bring her mobility back, she will regain some kind of quality of life. Sorry to ramble on, but I honestly could go on further, but I won’t. I know that there are lots of people out there going through the same thing, but if anyone wants to give me some advice it would be very much appreciated. Thank you.

Hello Lucy. Really sorry to hear what your daughter is having to go through. MS diagnosis can take a long time and the problem is made worse by the shortage of neurologists. Hang in there.

Not sure what advice to give about your daughter’s GP who doesn’t sound at all helpful.

As a short term fix for your daughter’s lack of mobility have you looked for second hand wheelchairs and/or Rollators ? We got some for my then 95 year old (now deceased) Dad.

If you look through the MS Society Website you can find a number for a helpline . They might be able to provide advice etc on your GP, benefits and more.

Sending you both my heartfelt and best wishes