A really nice Neurologist - and yes I... - Hughes Syndrome A...

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A really nice Neurologist - and yes I am telling the truth!!!

InSpain profile image
11 Replies

Well this is a very very long story cut very short. I live in Spain and on Monday of this week travelled to Barcelona with my husband to have an appointment with Dr Richard Cervera – what a great man! He was kind, considerate and most of all listened to all my symptoms without making a judgement.

If I tell you that after my last stroke last September the idiot junior neurologist described me as have a bizarre pseudo spastic type walk and said that there was nothing organically wrong with me. When I replied how delighted I was with his diagnosis and asked when I could stop my anticoagulation medication he replied that I was an obstructive and difficult patient and sent me to see a psychiatrist saying that I had a Conversion Disorder. Since then nobody has taken any of my symptoms seriously. I have been told to take 2 paracetamol and not to keep bothering them!!!! Yes I know it's absolutely appalling!!!

HOWEVER...... there is good news because today, in Barcelona, I met with a Neurologist who too was kind, considerate and a real professional. After having extensive tests with him he has made a diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy which has in turn given me Autonomic Dysfunction. Sadly, the damage done is irreversible for me and my heart has been badly affected too. However, I feel justified to stick at least 2 fingers in the air at all the junior inexperienced neurologists who have made my life hell for the last 2 years!

I also want to thank APSnotFab and MaryF for their continuing support. Without you two I’m not too sure if I would have had the strength to continue. A big hug and thanks to both you fantastic ladies, your support has been phenomenal.

Tomorrow I’m going home and can’t wait! I also have been given a recommendation from Dr Cervera to get in contact with a specialist he can recommend in my area. So here’s hoping and fingers crossed for a brighter future!!! Love to all from here InSpain xxx

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InSpain
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11 Replies
MaryF profile image
MaryFAdministrator

I am so very pleased for you, sending you lots of gigantic hugs and nice to hear about a 'good' neurologist! Mary F x

InSpain profile image
InSpain in reply to MaryF

Thanks Mary xxx

InSpain profile image
InSpain

Yes, think of me later on today winging my way back down the motorway with a bow in my hair and the trouser suit MaryF suggested speaking like Dylan from the Magic Roundabout!!! "Totally wild man!!!!" xxx :D :D :D

Salty profile image
Salty

Did he mention IVIG? Many patients with CIDP benefit from IVIG.

InSpain profile image
InSpain in reply to Salty

No not at the moment. I'm waiting to see the Doctor he recommended locally as I have very serious heart valve problems and have recently developed angina too. So before I can have any treatment at all I need to have my heart evaluated. But I'll let you know how it goes xxx

ltespain profile image
ltespain

I am so, so, so glad to read this and happy that you now have a conclusive answer that gives you a treatment path even if they can't reverse the damage done. Glad also you got there before your mental health was totally destroyed! Go home, smell the orange blossom and feel good that there are at least some great health professionals here in Spain.

Thinking of you often and now my life is more 'settled' (i.e. I'm not flying back and forth all the time) shout if I can help with anything here. XXXX

InSpain profile image
InSpain in reply to ltespain

Thanks so much for your good wishes they mean so much to me. I feel I've been through so much in the last 2 years. It has been a nightmare and you have always sent me messages of encouragement. It's people like you who have saved my mental health and made me believe that I wasn't actually going crazy, especially as the levels of physical pain I've been experiencing have been so bad too. xxx

Brilliant, brilliant news! So pleased for you. X

InSpain profile image
InSpain in reply to

Thanks!! xxx

Hi InSpain,

I hear you all the way to Sweden. I can understand your relief. How wonderful.

A big Hugh to you from Kerstin

InSpain profile image
InSpain

Thank you Kerstin. Sending you a big hug too!!!! xxx

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