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Neuro Discharge

Hi comrades…

I was just wondering if anyone had experienced the same situation I am finding…

I last saw my Neuro 18 months ago & I was relatively well at the time, apart from some serious fatigue. He advised I take strong dosage of Vitamin D & added Modafanil (to replace… If I recall correclty Amantadine). He said I should contact my MS Nurse if I had any problems & I reported that I don’t have one… He told me that he would arrange this. Well, I was never assigned a NUrse & have not heard anything from him since this time.

Have been having lots of aches, pains, fatigue, cramps & other oddities lately so I visited my GP last week & she said that se would ask for ny Neuro to see me. I have now received a letter to contact my local Neuro dept to arrange app’t (all can be done online)… It would seem that my previous Neuro has discharged me! I went online & it stated that there is not an appt available within the next 18 weeks time limit.

My question is… as anyone else been discharged by their Neuro, having had a period of more than 12 months without major symptoms? I can’t believe tht I now may have to wait more than 4 months for an app’t???

Thank you x

Not sure if I’ve been discharged by the neuro but have taken myself into the long grass - I would push/make a fuss to see an m.s. nurse. They should be able to get you an appointment with the neuro. (My experience is that m.s. nurses are better than neuros!)

I recently saw my rehab specialist doctor (who is a neurologist by training) and suggested that now I’m no longer a candidate for any DMDs, I just see him rather than both he and my neurologist. He agreed, but said, ‘we’ll keep the door open as you may need MRIs and it’s always a good idea to remain open to seeing an MS specialist’. Which was better than I’d expected really. So I’ve not been discharged by the neurologist, I just won’t have any more regular appointments with him. I also have an MS nurse who is very good. And access to any number of specialists within the community neuro team.

So it seems utterly bizarre that you are left without any kind of parachute. No neuro, no MS nurse, do you have any services that you can call on for help? The hospital neurology nurses?

Perhaps it’s a matter to take up with your hospitals PALS (Patient Advice and Liaison Service) unit?

Sue

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I effectively discharged my Neuro years ago, as I never had a good piece of advice from one and visits were a complete waste of our time. Hardly his fault there are no approved treatments for PPMS and not dissatisfied in any way. I guess it depends on what flavour of MS you have and if monitoring is needed, but can see that access to a nurse would be handy in your case.

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