My healthy, athletic, popular young adult son, who had been looking forward to starting his own business, has spent most of the summer in bed and is progressively loosing more and more muscle function. At first we thought he was just tired from finishing college but when he said his muscles were becoming increasingly numb, about a month ago, we took him to the GP. Eventually he was referred to the Ambulatory Emergency centre and we have been told he will get an appointment with a neurologist. But when? He is progressively deteriorating, struggling more and more to get up and down the stairs.
My son is doing the research and conducting his own experiments eg: what happens to his legs when he puts them in hot water or cold water. From the research and results he is coming up with, MS is the most likely diagnosis.
As his condition worsens we are trying to look ahead but it is difficult until he gets a diagnosis.
How long can it take? Should we go private? (Though this is not really realistic for us). Any suggestions, tips or likely outcomes welcome.
Thank you.
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Hi Beverley, I’m so sorry to hear that your son and family are going through this. Must be really shocking that he has such dramatic symptoms completely out of the blue.
In terms of timeline, my MS diagnosis took about 6 months but know it varies massively depending on location etc. I had a spine scan at A&E (went to A&E a couple of times when numbness kept spreading), then had a few months wait for a brain scan and lumbar puncture before a diagnosis. There are admin supports called neurological secretaries if your son wanted to ask a bit more about when he might get an appointment/update on any symptoms changes. I mainly only called these team members once I already had appointments in place, so don’t know how much this will help, but perhaps they might be able to give him more of a sense of length of wait times etc.
My symptoms also didn’t affect my day-to-day as much as for your son, so can see why you’re looking at other options here. If you’re looking at a chronic condition, I’ve heard that it can be better to stay within the NHS system since notes/scans etc will be easier for future medical teams to reference, but appreciate that this is really affecting your son’s quality of life so can see why you’d be tempted to get investigations done privately since you’re all still quite in the dark about what’s going on.
If you don’t get many responses here, I’d also suggest posting or having a look at previous posts in the ‘New diagnosis and before diagnosis’ section.
Finally, I hope you are being kind with yourself and taking some time for you. Must be so horrible to see your child go through something like this right as he’s on the cusp of an exciting new chapter of life - sending a lot of strength your way. Really hope you get a neurology appointment/some answers soon and sounds like he’s done the right thing so far by getting checked out.
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