Autonomic neuropathy?

[DonnaC-T]

Hi
My GP has suspicions that I have autonomic neuropathy. Well at least she definitely said autonomic. She recommended I see an endricinologist which the dsn had already suggested but the appointment won't be for six months. Should I be doing anything different? I'm not 100% sure what it is. You forget to ask questions at the time and now six months seems rather long :/
Thanks x

 

[robert72]

Hi Donna

Do you have any symptoms that gave rise to her suggesting you have autonomic neuropathy?

The main issues from autonomic neuropathy are heart rate, blood pressure, sweating and digestion.

My GP has suggested that I have slow transit of the gut, but I have not been referred anywhere for it - just given some tablets to stimulate contractions when it gets a bit too sluggish.

 

[Adele99]

It's damage to the nerves which control body functions which happen without us being aware of them.

Eg blood pressure and heart response rate to changing circumstances. So can cause dizziness or lightheaded ness when first standing up or changes in posture, exercise intolerance .

Nerves controlling digestive contractions, sluggish digestion, constipation , diarrhoea. Can be intermittent.

Nerves controlling your bladder leading to urinary incontinence or retention

Nerves controlling how much you sweat, eg too much or lack of.

Loss of awareness of low blood sugars

Lack of response in pupil dilation, partial deafness from basso motor rhinitis

Erectile dysfunction in males.

And some other nasty things if you let it deteriorate badly.

You need to take really good care of keeping your blood sugar levels stable to avoid further damage.

 

[DonnaC-T]

Thanks for the explanations. They are very helpful.
I was diagnosed with raynauds a few months ago do assumed my temperature thing was that because I'm either too cold or suddenly very, very hot. Literally in seconds I'm sweating. But I'm usually cold? It's like my internal thermometer is broken.
My stomach can be s but funny. I sometimes feel nauseous for no apparent reason and I get lumps sometimes after eating. I'm assuming that's digestion.
I definitely can't hear as well as I used to and my eyes are more sensitive to light. I hadn't really thought of them all together and I suppose they come on slow. I wish I knew for sure.
My bs are controlled very tightly (now) and have been for a year. Doctor says too tightly but I was getting scared of complications, ironically. HBA1C is 5.7, I'm hoping that slows it down. X

 

[noblehead]

6 months is a long time to wait, if you know the name of the Endocrinologist then ring the hospital up and ask to speak to their secretary, they will try and fit you in beforehand if you explain to them that you are worried and concerned.

 

[DonnaC-T]

I think I'll contact the dsn I saw as she was the one who mentioned an appointment with this doctor. She said instead of seeing her it another dsn next time, to see the consultant, that's why it's six months.
Thanks x

 

[DonnaC-T]

I emailed my dsn this morning. I can see the consultant on Thursday. I will not panic. I will not panic. X

 

[noblehead]

I emailed my dsn this morning. I can see the consultant on Thursday. I will not panic. I will not panic. X

That's great news, hope all goes OK.

 

[seaspray1998]

Hi

 

[seaspray1998]

Donna you must go to see a neurologist - endocrinologist is the WRONG medical person

 

[seaspray1998]

If your gp is correct, then your condition is a very serious one, I'm sorry to say.

You need to get various tests done, nerve conduction test, qsart test, mri scan, ct scan, skin punch test, an endocrinologist only deals with metobolic imbalances, NOT the neurological complications from diabetes

 

[seaspray1998]

Go back to your Gp and INSIST (go to another if you get no joy) and insist on being referred to see a neurologist that at the very least specialises in peripheral neuropathy - DONT WAIT!

 

[seaspray1998]

I'm going to be setting up a facebook page etc, for anyone facing/going through having a neurological disorder, as the ignorance and even worse the appalling attitude of the medical profession is absolutely SHOCKING.

And there is NOTHING here in the UK to provide info, advice, support, latest research or advocacy, compared to that of America.

I have small fibre neuropathy due to being prediabetic, so I know what I am talking about.

You are welcome to get in touch if you want to.

Best wishes,
Ania
[email protected]
Skype: seaspray1998 (free call)

 

[DonnaC-T]

Thanks guys. I'm happy to start of seeing this consultant first x

 

[DonnaC-T]

Consultant was very thorough, lots if questions. He wants me to see a gut specialist first as the symptoms aren't consistant, rule out other things, he said a slight possibility of gastoparesis but only a possibility.
He's checking my thyroids again, 24 hour urine. He's also going to do checks for peripheral neuropathy just to be on the safe side.
I've got to see him in six weeks, dsn in three months.
On the plus side, my hba1c over the last 10 yrs hasn't been as bad as I thought. The highest was 9, in 2006, mostly 6's though.
Thanks again x

 

[robert72]

Good to hear they are checking everything thoroughly

 

[TopoGigi]

The National Hospital for Neurology and Neurosurgery in Queens Square London has an Autonomic Unit.
I was referred by my cardiologist after having two stents and a pacemaker fitted last year. Be warned it took almost a year to be seen and assessed and diagnosed with Autonomic Neuropathy. I have multiple autonomic neuropathys including cardiac which has come as a real shock.

 

[robert72]

The National Hospital for Neurology and Neurosurgery in Queens Square London has an Autonomic Unit.
I was referred by my cardiologist after having two stents and a pacemaker fitted last year. Be warned it took almost a year to be seen and assessed and diagnosed with Autonomic Neuropathy. I have multiple autonomic neuropathys including cardiac which has come as a real shock.

My Dr recently took me off Domperidone as it can (fatally) affect heart rate. The replacement tabs are not as effective but I think my AN is quite mild yet.

 

[seaspray1998]

Oh the ignorance of that doctor - I'm sorry but you have neuropathy.

 

[seaspray1998]

Theraputic uses of Cannabis.

I have an interest in this not because I wish to get high, but because of the pain reliveing properties of cannabis as I have small fibre neuropathy.

This is due to (although after discovering that you can also inherit it, I feel that rather some people with diabetes, I ws born predisposed to it)

Small fiber neuropathy is a very serious neurological disease in which progressively (although it can go straight to end stage) it destroys every nerve in your body.

The pain is utterly excruiating, along with the ever increasing burning and/or numbness, knife like stabbing pain and sharp pins and needle like pin pricking pain, aswell as nausea, a person faces losing all their bodily functions - eat, swallow (can end up choking to death) walk (terrible foot pain/swelling pain) double incontinence and sexual disfunction.

The drugs - as there are no real drugs specifically for nerve pain which is very difficult to treat - that are used, have MASSIVE side effects.

Patients can put on extra weight, being constantly groggy to the point of being a total zombie, and have hallucinations, and hear voices - even commiting suicide.

These drugs can also prove inaffective, and in case of opiates being given, highly addictive.

It is therefore utterly scandelous, when then is a proven viable alternative that can give me quality of life, I am being denied because of backward thinking policitians who continue to ascribe to upholding an outdated law.

http://gu.com/p/4vnd4


Theraputic uses of Cannabis.

I have an interest in this not because I wish to get high, but because of the pain reliveing properties of cannabis as I have small fibre neuropathy.

This is due to (although after discovering that you can also inherit it, I feel that rather some people with diabetes, I ws born predisposed to it)

Small fiber neuropathy is a very serious neurological disease in which progressively (although it can go straight to end stage) it destroys every nerve in your body.

The pain is utterly excruiating, along with the ever increasing burning and/or numbness, knife like stabbing pain and sharp pins and needle like pin pricking pain, aswell as nausea, a person faces losing all their bodily functions - eat, swallow (can end up choking to death) walk (terrible foot pain/swelling pain) double incontinence and sexual disfunction.

The drugs - as there are no real drugs specifically for nerve pain which is very difficult to treat - that are used, have MASSIVE side effects.

Patients can put on extra weight, being constantly groggy to the point of being a total zombie, and have hallucinations, and hear voices - even commiting suicide.

These drugs can also prove inaffective, and in case of opiates being given, highly addictive.

It is therefore utterly scandelous, when then is a proven viable alternative that can give me quality of life, I am being denied because of backward thinking policitians who continue to ascribe to upholding an outdated law.

http://gu.com/p/4vnd4