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Limbo??

Hi everyone, I have been seeing a neurologist for nearly a yr after taking two bad episodes of whatever which had me at a&e which started the ms suspicion. I was originally diagnosed jan 12 with fibro, but with neurological condition on top but after a&e in mar 12 symptoms had very much changed. I have all the classic symptoms of ms says my neuro but my MRI only showed a few white spots and LP was clear. Although I was put on neurotonin, duloxtine and ldn in July. I should also say that from feb12-jul12 I was mostly confined to a wheelchair. But gradually symptoms seemed to get better slowly, but in nov I tools bad episode which left me unable to walk, very fatigued and numbness pins and needle etc and speech problems - neuro saw me straight away and said it looks like rrms and put me on course of steriods. Also I was told ldn wud take a yr to get into system to work and see the benefits and I must admit I am getting longer good spells in between but when I’m bad I’m very bad and back in wheelchair which as u can understand is very scary. My gp and other consultant say its ms but my neuro still to dx ? Although I need to make my apt as more new symptoms appeared recently and he said I needed to come see him. I understand not having a dx is a good thing in a way but sometimes it’s hard to know who to talk too and who understands exactly whatsoever happening to me esp when u have a young family. I hope I haven’t ranted on just after some support from anyone else who feels or has felt the same as me. Thanks k :slight_smile:

I’m a wee bit puzzled by why you haven’t been diagnosed and why you’ve been prescribed LDN. Do you know exactly what was found in your MRI and how this compares to the McDonald criteria? Who suggested LDN first (you or your neuro)? Lots of people claim to benefit from LDN (and lots don’t), but it has never been properly trialled and isn’t approved for MS, if indeed anything. Given the severity of your attacks, it sounds like you should be on one of the more effective DMDs, possibly Tysabri, but potentially one of the soon-to-be-approved new DMDs. Of course, that means getting a diagnosis first. If your neuro doesn’t diagnose you this time, then it’s surely time to see a new neuro? A negative LP is not a good enough reason to withhold diagnosis. Good luck. Karen x

Hi Kel, I agree with Karen (Rizzo) - not everyone with MS has an LP or even if they do - a positive one. Plus it’s not absolutely necessary to have an LP to get a diagnosis (although it can help). Clearly you need some clarification and if your neuro isn’t forthcoming with where to go or what to do, then maybe it is time to see another neuro instead. It’s definitely time to make that appt. whatever you decide. Good luck and let us know how you get on. Debbie xx

Thank u both ladies glad to hear from people who understand exactly what I’m going through will keep u posted it was a consultant and my Nuro who put me on ldn last July - just hate the limbo of the unknown ESP when two other drs have dx me as having ms just worried if I’m on wrong treatment my symptoms will just keep getting worse and don’t know each time how I will be left :frowning:

I’m gobsmacked that a UK neuro put a patient on LDN, but won’t even diagnose you. Is this neuro an MS specialist working for the NHS? If he isn’t, then I would strongly urge you to ask to see one.

Kx