Neuro referral

Hi

Has anyone been referred to neurology for autonomic dysfunction?

I have to make an appointment tomorrow at local hospital for a telephone assessment locally

I am wondering if this has to happen first in order to get an appt at a tertiary specialistCentre .

anyone any idea?

[Jay66]

My own referral to neurology for weird symptoms meant I was put on a waiting list for a year. About 11 months later I got a letter asking if I still needed to see a consultant. I said no - the weirdest symptoms had gone away (they go in phases). It is one way to reduce the neurology waiting list!

Anyhow I believe the telephone appt system was introduced later as a way to get on top of the waiting list, and head off patients with issues which are not really neurological problems, because the waiting lists were horrendous and people must have been dying on it.

[Hidden in reply to Jay66]

Thanks Jay66, I hadn’t thought of that. Will make sure I have my list of symptoms to hand during the telephone assessment!

[Jay66 in reply to Hidden]

I may be wrong of course! Different nhs areas operate in entirely different ways. Hope it goes well.

[Tillyray]

Hi. To assess my symptoms, my EDS specialist made recommendations to my GP in diagnostic letter for a 24hr heart monitor and BP monitor -The heart monitor fitted at hospital and BP from GP- from that it was recommended I get referred to a cardiologist. The cardiologist diagnosed Autonomic dysfunction, postural hypotension and tachycardia... I believe I was perhaps lucky because I understand not all cardiologists are familiar with POTS, yet surely should be familiar with AD symptoms as it appears quite common for various symptoms to occur in elderly patients...

I was advised of measures to help my terrible, debilitating symptoms, which at worst had confined me to bed for eight weeks... The cardiologist said if these measures didn't help, I could have medication but that he would want me to have tilt table test first to find degree of postural drop..

Fortunately, taking 3L of water daily, Nuun electrolyte tablets, extra salt, doing counter pressure exercises has all helped to improve my condition greatly🙂...

I still suffer symptoms but I am keeping them at bay and controlling the flare up🙂.. I do have other symptoms which I'm guessing are related? and I cope with these as best as I can..I intend to have some other symptoms -related/ unrelated to hEDS?- investigated soon.. I may need to have the tilt test at some point, but if I can manage without the medication I prefer to try.

I have seen a neurologist in the past but not in relation to this.. The telephone assessment happens at my daughters GP surgery. It seems to be to decide if the symptoms are worthy of a Doctors appointment or a nurse's, and to then give a timescale for when she will get the appointment😲☹ As with my daughters GP surgery, I expect the hospital assessment is for the reasons Jay has given.

Good luck. I hope you can receive the help you need. Let us know how you get on..Best wishes xx