Last reply 3 months ago
First appointment for suspected MS

Hello. I was diagnosed in 2011 by an orthopaedic surgeon of having a neurological illness CRPS – main symptom neuropathic pain & weakness. They wrote me off as a lost cause.

I recovered but have had a number of recurring episodes. In December I started with a significant episode & sought help from a neuro – rehab specialist who said this was not CRPS, and looked like MS. My dad had MS also & I’ve often thought I saw in myself the same difficulties he had. I got an urgent referral to neurology- in 6 months time!! I can’t live with the anxiety this is causing so I’m paying for a first consultation with an MS specialist on Tues …. I’m really scared….. what should I expect?? I definitely can’t afford any more private treatment so will be going back into the nhs after this.

Also… in this recent episode I’m having I’ve got symptoms you may expect – eyesight issues, muscle weakness, tingling sensations, fatigue… but also loss of taste and needing to drink all the time. I can’t get rid of the thirsty sensation (had diabetes checks which were all clear) assuming that’s something else going wonky??? Anyone else experience the loss of taste or excessive thirst??

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3 months ago

@emma_jane_1 , the initial appointment usually comprises of :-

a physical examination, comprising a bit of prodding and poking, walking, etc.; and
a discussion of previous symptoms – best to take a previously prepared list; and
a discussion of the subsequent tests needed, e.g. an MRI Scan and bloods, to be possibly followed by a Lumber Puncture and Visual Evoked Potentials (VEP).

Loss of taste and excessive thirst could well be symptoms of MS. MS damage interferes with the integrity of messages to and from the brain from nerve endings. So, there’s no reason why the nerve endings around your mouth/tongue have been affected. This may well recover.

Do let us know how you get on.

3 months ago

Hello @emma_jane_1, sorry you are going through all this. It’s unusual for somebody to say ‘this looks like MS’ without having recourse to MRIs. But it’s great that you’re advancing things by going private, even though you shouldn’t have to. I did the same thing and got an MRI done. Anxiety may well be exacerbating your symptoms, but it’s no surprise given all this worry. To be honest, you will be better off going into the NHS for ongoing investigations which would probably be a lumbar puncture if anything shows up your MRI. For your point meant, take a lost and timelines of possible related symptoms, but keep the points succinct. Please do keep us posted, wishing you all the best…..

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