Anyone else been diagnosed with Autonomic dysfunction on top of PBC?

[Knackeredknowle]

Anyone else been diagnosed with Autonomic dysfunction on top of PBC?

I've had an awful weekend, partner thinks I shouldn't be home but in hospital- Had it's of Bradycardia episodes (pulse under 35) over weekend that has left me feeling very poorly with pins and needles in hands and feet, blurry vision, breathlessness etc.

(Even in bed I'm pulling my knees to my chest to get more blood back in my body.)

I have hypermobility , worse when a child, so thinking perhaps, after much research , vascular Ehlers-Danlos Syndrome.

Anyone else similar?

Medical professionals are scratching their heads wondering what to do with me.

Please help - great desperation

Thanks

[Mary-intussuception]

Are you in hospital now.

[Knackeredknowle in reply to Mary-intussuception]

Thanks everyone for kind replys and concern.

Yes, been in hospital all day.

It's the same every time I attend.

I was wondering if anyone else with Primary Biliary cholangitis has this Autonomic problem also known as Dysautonomia...the Cardiac specialists seem to think it's the problem. (Im Not fitting into any regular medical box)

There must be someone who is suffering similar who may have experience.

I'm stable again now but only because I'm in bed not moving around.

X

[Mary-intussuception in reply to Knackeredknowle]

What are the hospital doctors doing to get your pulse up? Is it above 50 now?

Sorry I don't know anything about your conditions. Strange though, that you're stable if you stay still in bed.

Hope you get some information & appropriate care very soon. xx

[Annac]

If your pulse is that low I would be asking, ( if you haven't already,) to see a cardiologist without doubt.

[Knackeredknowle in reply to Annac]

Thanks Annac for your concern. Yes under Cardiac specialist team but they seem to be scratching their heads.

On symptoms I'm really bad...if I stay really still I improve....crazy.

I simply have no life x

[butterflyEi]

If you are still feeling poorly this morning I think you need to get back to your doctor and ask for a full blood screen and as Annac says referral to a cardiologist.

Medical professionals may be scratching their heads but hopefully you will find one that is interested enough in the unknown to want to investigate for you.

You are obviously in great need so maybe a request for a home visitis in order (rare as hens teeth I know!) but you would still need to manage to go somewhere to get your blood drawn for a full blood test.

Let us know how you get on and I sincerely hope you are feeling a bit better this morning.

best wishes

[Knackeredknowle in reply to butterflyEi]

Think I'm being referred back to respiratory and other autoimmune teams....all these specialist need to put their heads together . X

[Knackeredknowle]

Morning, I've been under the Cardiac specialist since July (stent fitted with heart monitor)

Friday saw the team at the hospital and asked me to stop angina medication for this Autonomic dysfunction they seem to think I have on top of PBC.

The episodes over weekend have been truly awful so going to Accident and Emergency Department this morning also I've emailed the Surgery with what's going on.

Really can't continue like this....deteriorating at a rate of knots. My Partner is really scared and feels I should be on a ward - safer.

I'll post again when I know more.

Thanks for your support.

[Philippastcarin]

Get to hospital

[Knackeredknowle in reply to Philippastcarin]

Hiya, yes I'm in hospital but sadly still no further.

Hopefully someone on here may have experience of Autonomic dysfunction and give advice.

Best wishes

X

[Philippastcarin]

So glad you went to hospital.

It seems we have some things in common.

I’ve had PBC for around 15 years but I also have some cardiac issues

I’ve had a heart attack a triple bypass and the aortic valve replaced and it al has come with it’s complications

I guess you’re in the US somewhere

I’m in the UK with the NHS so it’s very easy for me to get the relevant help

Keep pushing until you get the expert you need and remember there are a lot of people who care and are there for you.

[Knackeredknowle in reply to Philippastcarin]

Thanks for your post and kind words.

I think they going to try beta blocker s as Bigeminy rhythm.

Fed up and frustrated & feeling I'll be here for some time xx

[Hidden]

Hi, i also have PBC and Autonomic Dysfunction.

I was suffering dizziness, blurred vision and can only be described as strange episodes. I had low blood pressure, my pulse was 40 odd.

Luckily for me the hepatologist I saw at the time recommended I saw a cardiologist. I had an echocardiogram and a tilt table test, which I was positive and echo showed a small heart?

I just take a small amount of Fludracortisone Acetate daily for it and avoid dehydration, drinking plenty. If you get a cold or virus it can make your symptoms worse.

I hope this helps a little and you start to feel better soon.

Sending you a hug

[Knackeredknowle in reply to Hidden]

Thank you for this. I was feeling alone and scared to be honest.

I'll post again when I know more.

Xx

[Knackeredknowle]

I've been prescribed beta blockers, had an iron infusion and seeing specialist tomorrow for a second opinion.

It could be systemic scleroderma or EDS...

I'm still bed bound and on a Cardiac monitor.

Think I'll be here for another week.

Sad face xxx

[Hidden]

Hope they manage to get you the answers you need. It is really frustrating .

Hang on in there.

X

[Hidden]

Forgot to ask you do you have difficulty swallowing sometimes?

[Dlm23 in reply to Hidden]

I have PBC and was having issues with swallowing/choking. I had an EGD 3 weeks ago and they diagnosed me with eosinophilic esophagitis.

[Knackeredknowle in reply to Dlm23]

Thank you for sharing, that isn't nice. I hope they are able to make you more comfortable.

I had a tiny episode back along due to a hernia and got under control by Omeprazole (not sure its completely cured)

Hope your okay.

Best wishes

Mx

[Knackeredknowle]

Hi Aqua73, yes I do, I feel as if something stuck in the back of my throat.

Tonight , after seeing the top guy, three years later from first complaining about symptoms, was told the PVC's are definitely

affecting my throat. (Feels as if something stuck)

They are trying new medication...I guess wait and see if I'm cured x

[Hidden]

Hi, it’s an awful sensation. Sometimes it feels like your food is lodged and you’re going to choke.

Keep your chin up.

X x