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Hello, I'm new. Had 2 NASAH a month ago. No neuro signs but just left with headaches, fatigue, depression and major anxiety.  I was in hospital 5 days then sent home with no follow-up, no advice, no prognosis. They just said the neurologists would contact my GP when they had studied scans.

 

My GP called me a few days ago and read the letter he had received. They are almost certain the bleeds were caused by a condition called Amyloid Angiopathy. I looked it up and it is a degenerative progressive brain condition for which there is no treatment.  That was communicated to me in a four minute phone call.

 

Needless to say I am devastated and terrified. I've Googled it far too much and there is a Facebook Group for it but that's even worse than reading Dr Google.  Has anyone else been informed that this could be cause of their NASAH. 

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I cannot give you med advice but follow up with your gp and neuro . Drink lots of fluids, rest , sleep, no stress etc.

also discuss depression/ anxiety. Talking to friends, family will help too.

 

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Welcome to BTG Vicky.

Another idea is to contact the neuro nurse specialist at your treating hospital if they have one. They will be able to explain more fully and be able to possibly put your mind at rest. Give them a ring.

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Hi Vicky,

 

Welcome to BTG and it is a good place to air your worries xx

 

Scary I know as I had SAH in 2009 and then a real bad seizure in February this year and was told I had 2 chronic bleeds, well I went and done the rounds ..This was me "Chronic bleeds and he says nothing to worry about" got to look it up and it said Acute is worse than Chronic ! but scared me (Which isn't hard to do) 

 

As Super said "Do you have a nurses number you can ring who liase with Surgeon?  We did and my husband was always ringing him in early days, so I am told. Try to ring someone at hospital and ask for advice and what to do to help yourself  ….Wishing you all the best xxx  Stress I was told was bad for me also xxxx 

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Thanks for your support, it means a lot.  I have a GP appointment in 2 weeks when I shall ask for a another explanation as I can't remember everything. Then ask to talk to a specialist neurologist because here, in UK, you only get ten minutes on nhs but if I pay to see someone privately I will get longer.  Don't know if I'm more scared of getting dementia or sudden death. Neither appeals. 

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Hi Vicky glad you have made an appointment to speak to your gp. Make sure you write all your questions down and leave room on the page to write answers down too. 

 

I dont know know where you get the idea that you only get 10 mins consultation time on the NHS, patients in our clinics regularly have 30 mins or more. 

 

 I saw my nurse specialist after my NASAH and she gave me all the time I wanted. She is still happy to answer questions now 3 years later so call the unit you were treated at and ask to speak/see someone. 

 

I hope  you can manage to try and stop worrying as this will only worsen your symptoms of fatigue etc. Unfortunately the only way this will happen will be by getting support so get on to the hospital soon. I feel for you and hope you get some answers soon. 

 

Clare xx

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Some Docs do that nowdays Clare, my one for instance lol xx I have to book 2 appointments if I want to discuss something else !

 

I go in there give him my notes they float to the floor, but I have to make notes or I'll forget.

 

Ahh well !! Such is life ...and good luck Vicky at Docs xxxx  Don't forget notes xxxx

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Yep, it's a 10 minute appointment at the GP's down here too or you have to book a double appointment if you want longer....that's if you can find a double appointment available. x

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6 minutes ago, Vicky.W said:

Does no-one know anything about amyloid angiopathy?

 

Vicky, to be honest I don't remember anyone on this forum being diagnosed with it although I could be wrong.

 

It would really help, possibly someone in the future, if you could post anything you find out about it from the neurologist but not medical advice.

Wishing you well with your forthcoming appointments. 

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Hi Vicky

 

Sorry we don't seem to be able to give you more advice about amyloid angiopathy. Have you tried to contact the unit you were treated in to see if there is a nurse specialist you could talk to? Lots of units have such a person now who is often able to give good clinical advice about your diagnosis.

 

The neurologists are often not as helpful and 'patient friendly' as nurse specialists, I don't know why but this is often reported on the site.

 

Try and give them a call tomorrow and see if someone can give you some time and advice.

 

Good luck

 

Clare xx

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