Autonomic system testing

Everyday living
1

Hi Peeps,

I was just reading a post where someone mentioned that they were going for autonomic system testing, and I wondered if anyone had been tested for autonomic dysfunction, what it involved, and also if they have any treatment for it?

I’m getting closer to a referral now (finally) as this was picked up by my balance specialist and is truly one of my biggest problems. He told me that it’s ‘not common’ with MS, but after mooching around a couple of FB forums, I’m not so sure…

My symptoms are:-

Terrible night sweats (not hormone related) and inability to control body temperature (hot/cold);

Inability to remain vertical for long (either standing or sitting - postural hypotension), palpitations/feelings of anxiety, dizzyness on standing (sometimes delayed then I feel like I’m going to black out), all related to effects on heart rate/blood pressure;

Exercise intolerance (the slightest thing can wipe me out for days and I’ve struggled in the past to get my OT to understand this but now I avoid seeing her);

I’d be interested to hear if other people have similar problems.

Mags :slight_smile: xx

2

Hi Mags,

I have just what you describe,and i know its autonomic dysfnction,i have read up quite a lot about it ,over the years, the dr just puts it down to panic attacks,which it 100% is not,i get all the symtoms of it,but i am going to mention it to,my neuro,when i next go, this time last year i had a real bad time of it,and thought i was dying,but yet again,it was put down to panic attacks,

i have had panic attacks in the past,and know how they feel,and they are bad enough,but the auotnomic dysfunction attacks i get are much worse,its not a very common symptom of ms,but any illness that involves the brain and spinal chord,can cause it,just wish my dr would take me seriously, about it.

there are tests you can have for it, and i know it can be very dangerous,and i know drs should be aware of it,if you do have it,incase of a medical emergancy.

i am in bed most of the time,because of it,i can only manage to be up for short periods,and am often asked WHY i am in bed as much as i am,as though i have a choice lol,i have really bad dizziness,palpitations, heat intolerance,excercise intolerance,

dont think theres any treatment for it though,do you know ?

j x

3

Hi J,

I really don’t know if there’s any treatment. I hope someone will come along who does.

For now, I drink fluids constantly throughout the day and eat salty foods if I crave them as I’ve heard it can help to increase blood volume/pressure.

I spend most of my life horizontal and yes, it’s difficult for people to understand, especially since exercise it supposed to be good for people with MS. I’m constantly questioning myself about whether it’s the fatigue/intolerance or whether I’m just lazy/demotivated, but doing a bit of housework soon reminds me, lol!

Balance specialist has asked my GP to refer me back to neuro regarding testing, so I shall let you know if I make any progress.

Mags :slight_smile: xx

4

hi mags

i have a faulty thermostat, i’m always either too hot or too cold.

i have postural hypotension, found out about it one morning when i came round with paramedics kneeling beside me on the kitchen floor. scary!!

i have got used to it now and can tell when my blood pressure is falling, in which case i get down to the floor.

my gp told me that my sodium levels are low and to eat a spoonful of salt!

yeew! i have a packet of ready salted crisps instead!!!

i do yoga and pilates classes and manage mostly although the downward dog would make me pass out.

carole x

5

Oh, it’s horrible isn’t it Carole? Mine wasn’t too bad because I can’t stand up quickly enough to get dizzy these days but I can get all the way to the kitchen now before it kicks in. I just hang on to something and get my head down as low as I can. Maybe there should be special classes for us in how to crumple gracefully?

Think I’ll be stocking upon Walkers ready salted this week (my fave)!

Mags xx

6

or a bag of chips from the chippy!!

i hadnt realised what i was missing out on with my low salt lifestyle!

every cloud…

carole x

7

hello all

I think it was my post you saw as yes i have autonomic dysfunction for which my GP has referred me to see Proffesor Mathias in the autonomic unit at Univeristy college london hopsital UCLH national hospital for neurology and neurosurgy.

If you google his name you will find details of testing etc.

I go soon for testing 3 day inpatient stay but the waiting list is very long about a year.

I am told there are drugs to help so am looking forward to the outcome of my visit.

Just to let you know I found the WII Fit balance games helped a lot with my rubbish balance which has greatly improved might be worth a try for now.

Good Luck

Noms

8

Oh yes Carole! Just stocked up on crisps. I never have added much salt to food but now I use sea salt, as I read somewhere that it’s better for us than mineral salt (closer to the salts in out body).

Yes Noms, it was you and thank you for your reply. I’ll do a bit of research, but in the meantime it would be great if you could let us know how you get on?

Mags xx

9

Hello,

I paid privately to be tested at the National Hospital of Neuro. Its the only place in the country you can have it done. I saw Prof Matthias (only does Private appts now but hes the leading man in the field). It cost in the region of £2,000 for the tests but def worth looking at. I saw him at the Lindo Wing - St Marys Hospital, London for my first apt. Had to wait about 6 weeks for a private apt for the tests. The nhs waiting list is over 1yr!! In the meantime eat more salt, drink 2 1/2 litres of water, squeeze on a rubber ball when you feel the symptoms coming. Helps to regulate the system.

Good luck!

10

Hello,

I paid privately to be tested at the National Hospital of Neuro. Its the only place in the country you can have it done. I saw Prof Matthias (only does Private appts now but hes the leading man in the field). It cost in the region of £2,000 for the tests but def worth looking at. I saw him at the Lindo Wing - St Marys Hospital, London for my first apt. Had to wait about 6 weeks for a private apt for the tests. The nhs waiting list is over 1yr!! In the meantime eat more salt, drink 2 1/2 litres of water, squeeze on a rubber ball when you feel the symptoms coming. Helps to regulate the system.

Good luck!

11

Hi Baligirl,

the 21/2 litres of water is that in the course of the day,or all at once,when you feel an attack coming on ?

j x

12

Hi J, I think she means over the course of a day.

Baligirl, is there any other treatment they can offer (apart from what you’ve already said)? There’s no way I can afford to go private so I’ll just have to wait for a referral. Curious to know if there are any meds available.

Mags xx

13

Hi

There are several drugs to help a good place to find information is the Dysautonomia Information Network site which lists them all and helpful advice to cope with symptoms.

will let you know how I get on

Noms

14

oops meant to say you might find the website better if you google DINET

best wishes

Noms

15

Hello,

2 1/2 litres daily:-). If nothing else it does wonders for your skin! Good luck

16

Hello,

2 1/2 litres daily:-). If nothing else it does wonders for your skin! Good luck