@MSMotherSucker 

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MSMotherSucker

My 20 year old daughter has MS

We had the MS bombshell dropped on us last week. My 20 year old daughter went to what she thought was a routine check up at the hospital and was told the MRI scan that she’d had in August shows she had multiple white markings on her brain and that it was MS. The neurologist said that she couldn’t believe she didn’t exhibit more symptoms than she currently shows but said she couldn’t discuss her scan further as this wasn’t her area of expertise and that my daughter would need to see the MS specialist, appointment is in 8 weeks time. We have been left totally in limbo and are worried out of our minds, thinking that it is really serious because of the neurologists comments. So much worry at present that we are now paying privately to get a consultation and to get some information about this disease. My daughter had been having pins and needles and numbness in her legs and discomfort after walking for 10 minutes. After 6 months of being passed of with a trapped sciatic nerve she then had numbness in her left arm and little and ring finger. The symptoms have been continuous for the last 10 months and had the MRI 2 months ago. She had blood results which were normal and her reflexes are good. I’m in total denial about this disease as to look at her she looks fine, but obviously her brain is far from fine. I’m worried sick for her and don’t know what the future is going to hold. Will she get it faster and quicker because she is so young? We have so many questions and can’t believe we have been left so high and dry by the hospital. There is no history of this in our family. It is such a massive shock. Anybody else been diagnosed so young and so quickly from MRI scan?
@Stumbler

Hi @msmothersucker and thank you for joining us on behalf of your daughter. Your choice of username is understandable, but MS doesn't have to be the condition that it used to be. It's not a death sentence and it's not an express one-way ticket to a wheelchair either. The NHS do themselves no favours when they provide a diagnosis of a condition that they have no expertise in. Whilst the symptoms are indicative of MS, I believe the diagnosis is premature, as there are specific criteria that have to be satisfied before a diagnosis can be given (https://www.mstrust.org.uk/a-z/mcdonald-criteria). To give a diagnosis and then say that you need to see someone else for further details is, in my mind, unforgivable. But, it is what it is and can't now be undone. So, you need to calm all the family down, whilst you put this into some kind of context. Acquiring knowledge of MS will drive the process, but you have to ensure that you use creditable sources. Doctor Google can be a very bad source. Stick with the MS Trust and MS Society. In fact, the MS Trust has a specific set of brochures for the newly diagnosed. You'll find them here under the "Newly Diagnosed" button :- https://support.mstrust.org.uk/shop The brochures can be read online or hard copies can be ordered, at no cost. Whilst there is no cure for MS, there are now a range of treatments available to manage/slowdown the condition. Many more than were available 10 or 20 years ago. Your daughter is young, so is well placed to respond well to these treatments. She has age on her side. I hope this will calm your family. We're here to help so please fire any questions our way. We know a fair bit, a case of necessity. And good luck with the private appointment. Please let us know how that goes.

@Vickim654

I completely understand your worry, I got my diagnosis on Friday and right now my head is everywhere. I’m 26, was looking at starting to plan weddings, mortgages and a possible family. I joined this group and another on social media and reading everyone’s comments and stories I now feel semi relaxed, I know that it isn’t the end of the world. I just have to embrace it and learn to live with it. Plenty of others do so I’m up for the challenge (not that we have a choice) I cannot comment on your daughter but thinking of you and her and just remember there are so much support, this group being one of them ❤️ I’m sure others will comment to help calm your nerves