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| Antone treated at QMC hospital Nottingham |  | ||
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Posted by: Gingerkitty ® 07/21/2008, 19:46:09 |
I have been under the care of Dr McGlashan at the QMC for 5 years and so far , despite performing 3 operations and 2 lots of botox, has refused to give me a diagnosis of SD and only comments that I have a muscular problem, too right!!!
I have questioned him and the neurologist about their opinion on Dr Berkes surgery but both claim they have never heard of it. This worries me as either they are not 'up' on this condition or for some reason they are refusing to comment. Wondered if anyone else was under the care of the same doctor. Seems that many people on here are in America. Would love to hear from more of you in the UK for a bit of help and support and a sharing of experiences and symptoms. Thanks |
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Posted by: iris ® 07/22/2008, 03:00:44 |
Hi Antone I am under the care of Mr. Murty at Leicester Royal Infirmary. He diagnosed my ADSD 3½ years ago. I had surgery to drain my vocal cords which did not improve my voice. I have had 7 botox shots which really work well for me. 2 missed the spot but that is something we all have to deal with. SD has not changed my life at all - I still work in a school office, answer the telephone, speak to visitors, socialise with friends etc. I find once you tell people the problem they are all very understanding. Does the botox work for you? Mr. Murty has been fantastic with me and I have complete faith in him. I only have to telephone and say my voice is starting to go and I am back for another dose within 3 weeks. I go to the operating theatre for my shots and although the first time I was really scared it does not bother me now - its the not knowing what to expect that is scary. Do you have your shots in theatre or clinic? Mr. Murty is very aware of SD and how to deal with it My last time in theatre after I had the shots he was explaining it all to one of his colleagues while I was still there. Maybe you should think about seeing someone else who knows more about our problem. The only plus is that we get our shots on the National Health whereas people in the US spend thousands of dollars and some travel 400 miles. As for symptoms I always say I am back to croaking!! Half a word will come out and not the rest and it is all a great effort to speak. By the end of the day you feel exhausted just with speaking and sometime I start to say something and then think "I can't be bothered to make the effort". After botox shots it is wonderful to speak without effort. As I always say we could have something far worse to deal with. It is not life threatening and we have to accept this is who we are and then ignore it and carry on with life which is good.
Iris
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Posted by: Gingerkitty ® 07/24/2008, 10:10:43 |
Thanks for your reply. I will look into Leicester as it is only 30 mins drive for me. I have my shots in a clinic and find the experience extremely traumatic especially as I have had to see a hypnotherapist for needle phobia for the past 10 years anyway!!! Certainly has helped me face my fear although fainting is as regular occurence!
The botox has helped me very little but have only has 'small amounts' injected I have not been told the amount but I am contacting my specialists secretary to find this information out. I have also been told that the royal hallamshire is specialist care in adsd have you heard of this. I am definately going to ask my doctor to see another ent doctor as I do not feel helped at all. |
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Posted by: mdubovick ® 07/24/2008, 00:43:15 |
You may wish to contact Clive Hampson of Glastonbury, Somerset in the UK. He is the NSDA Regional Coordinator for UK/Europe.
His email address is Hclivecjh@aol.com |
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Posted by: snowie ® 08/01/2008, 07:08:14 |
Hi there, You may also like to get in contact with the UK Dystonia Society: www.dystonia.org.uk , who are providing support for all types of Dystonia in the UK, including SD (or laryngeal dystonia, as it's known here in the UK). I have been helping one of their Trustee's to develop a network, in the UK, for people with SD over the last couple of years, which is a good source of support. And the Dystonia Society have a telephone help-line which can also provide information and support for all types of dystonia's. They also have a newsletter which focused on SD last year, so would be worth getting hold of a copy. I also took part in some research at the National Hospital for Neurology and Neurosurgery at Queens Square in London, to do with a study of transcranial magnetic stimulation (TMS) in relation to dystonia. I will look up my notes and post them here for any one that's interested. Feel free to email me on debbie.skerrett@ntlworld.com if you want to chat further, hope you find a good ENT, the Dystonia Society would probabaly be able to give you some further contacts in your area. I live in Devon and am meeting up with a lady in Plymouth soon with view to setting up a Dystonia Support Group in Devon, which is going to be supported by the UK Dystonia Society.
With best wishes, Snowie. AB SD (2003) & Hand dystonia
Modified by snowie at Fri, Aug 01, 2008, 16:45:42 |
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Posted by: GingerKitty ® 11/30/2008, 15:48:29 |
Just an update really and wondered if anyone had any advice. I have just recieved another botox injection administered at the QMC again (after 5 months of waiting). I have little faith in the doc at the moment but something is better than nothing. I actually asked him how much botox I was recieving he simply said 5. Not sure if this is 0.5 or 2.5 each side I have no idea he did not explain. I have some relief from the jabs but can still feel the muscles in my neck almost fighting with me when I try to speak. My voice is still weak but at least I dont feel like I am being strangled constantly.
I have requested to be seen at The Harley voice clinic in London and they have been brilliant so far. They have sent all the relevant paperwork to my GP practise to try and get funding from the PCT for the treatment. I have heard that this is an excellent clinic and hopefully I will recieve a better diagnosis and advice. Just wondered if anyone else had been there? |
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