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@squishedmish81 

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squishedmish81

Am I the only person between diagnosis and and an MRI?

Hello, So I got diagnosed with MS is April by a very good Neurologist based on a fairly nasty attack which left me numb/very very weak on my right side and unable to walk in February. He ruled everything else out with all of the other tests and while he couldn't find lesions on a standard MRI, he is sure they will be find on a deeper MRI. Since then I've done my research and realised that its very obvious that I've had this a while (I've been suffering from numb hands and feet for a long while and for 3 years at least have been in and out of illness, pins and needles and weakness. Since February my life has changed as the symptoms are now sticking and I have had a number of relapses since. My appointment to see an MS dr is in August and I understand a deeper MRI and a lumbar puncture will be done. Here's the thing, technically, despite everything and the fact that every day is like wading through treacle and the attacks are rubbish and I often lose feeling in hands/arms/toes/legs etc and have blurred vision in one eye....technically nobody has seen a lesion yet. So, well I feel like a bit of a fraud and a bit pathetic. I understand that this period between being told you have MS and then lumbar punctures/deeper MRIs and help is common, but is anyone else in this weird holding pattern? I can't quite believe I want to see lesions on my own brain, but unless I do I think I might go mad!
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@Stumbler
@Stumbler
 

I can understand your confusion and frustration. MS involves lesions on the Central Nervous System, this includes the brain and all the way down the spine. It seems strange that you were given a diagnosis in April, but they are still investigating now. The lumber puncture is used to provide confirmation from an inconclusive MRI. Perhaps the MRI this time will cover the brain and the spine, with the possibility of contrast being used. Don't feel fraudulent or pathetic, the medical profession need to ensure that the "T"s are crossed and the "I"s dotted. MS is notoriously difficult to diagnose. Obviously, getting a formal confirmation is the first hurdle. As soon as this has been overcome, you need to know what treatment strategy you'll be offered to help you manage the condition. You're more than welcome on this forum as you navigate your way through this frustrating time.

@squishedmish81
@squishedmish81
 

Thank you stumbler. The wait is just the time it takes to get to see the MS specialist and I do understand that. I saw the first Neurologist privately to speed up the process, only to find out that the person I will be seeing going forward is NHS only and there's a wait. The frustration is now much worse it it got during that time! I thought I'd keep a symptom diary so that I could go through everything with him in August and even wondered (back in April) if I'd have much to put in it. Turns out I shouldn't have worried about that!