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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi everyone
I am really pleased to say that I have at long long last got my neurology appt tomorrow. It is at 12.15 (in theory, they are always going to be late at that time, I must be one of the last appts)
When I was last in hosp a couple of wks ago, they assured me I would actually see the consultant himself and I am taking my most trusted PA with me. She is actually a qualified nurse and takes no nonsense so will back me up.
I need to think what to say and make a list. any ideas?
I am hoping to leave with a dx, prognosis and you never know some treatment too.
I have noticed the neuro things more since the abatacept but that is mainly that the RA is much more settled (yes!). the neuro issue progression is limited to cold feeling inside my left ear and prickly feeling on the side of my face on that side.
made a list of all the symptoms.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
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Can't help with the ideas there Jenni ... but best of luck and hope it does turn out to be a one stop shop :) Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Good luck Jenni. Will be thinking of you. Hugs Sue 
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Think of you tomorrow Jennie x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Oh Jenni, at last! I hope the appointment provides answers and treatment and you are able to move forward to a brighter future. Great that you are able to take along a 'tried and trusted' PA, she will be a good support for you. Will be thinking of you :) Keep us posted. Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Good luck Jenni!
Thinking of you.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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just to say good luck Jenni,
let us know how you get on.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Just seen this, hope it went well.
Love Paula x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Please post when you are home and let us know how it went. MUCH love xxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Good luck Jenni - will be thinking about you. A list is always good. Even trivial things can some times prove to be more important than you realise.
Jackie
xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009
Posts: 43
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Hope it went well Jenni,let us know how you got on.
Poppyxxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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will be thinking of you . But i had a 12 .15 r.a app on Friday and was in at 12 .20 .So eat some choc keep you going and hope you will be out . Christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hi jenni - been thinking of you today. Hope it went well and you have some answers xx Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 177
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Hi Jenni
Hope it went well for you and you got some answers.
Love Shirley x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Jenni Thinking about you and wondering how you went on. Do let us know when you get chance  Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Thankyou for your kind support.
I'm sorry to say that it was dreadful. I am so very upset about it.
I went to see him and it was clear, from the off, that I am a rheumatoid patient that has dared take a space in his precious neurology clinic... his "neurological examination" took less than 3 minutes and he poked 3 bits I can feel. He paid no attention whatsoever to my list of symptoms and just asked for a list of RA drugs I had had reactions to as a history.
He then said "You clearly have severe RA which appears to be responding to treatment- there is nothing neurologically wrong so Im sending you back to rheumatology- (leaning to the nurse) its impossible to tell with a rheumatoid what is to do with what"
I blurted out "so staggering about and not being able to feel various bits of my legs and progressive neuropathy is normal is it"
"Do you even know what that means?"
"Well I think it means not being able to feel in some places and then the lack of feeling and burning seems to go onto effect other things"
"Umm well, you shouldnt use terms you dont clinically understand"
"You would think that the white patches on MRIs mean something- thats not normal is it?"
"What white patches?"
"I have had 3 MRIs the most recent 3 wks ago now."
"Oh"
He HADNT EVEN LOOKED AT THEM!!!!!
He saw that the nerve conduction studies were "normal" (as they are with stocking neuropathy apparently) and the tests from the Lumbar Puncture were ok apart from high opening pressure.
Much muttering to himself in a highly fed up tone while he quickly glanced at the MRIs. "Ah Yes these seem to show, um, yes, erm, oh right this MRI hasnt been reported on yet, err, there are lots of white patches...I shall have to look at your older records."
"I shall look at the scans and write you and your rheumatologist a letter"
Thats it.
No appt of follow up.
I haven't been able to tell you sooner I have been so exhasperated.
My PA is coming with me to see my GP tomorrow. I have formally requested my scans and notes from the hospital. My intention is that I ask to have a second opinion with someone who might give a damn and have an idea what is going on.
I am thinking of Harley street in London. No idea who or how much that might cost but in all honesty I am desperate.
I wonder what you think of all this- do you find some drs are just not interested because you have rheumatoid?
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Oh Jenni! I don't think I can say anything printable.
Definitely a second opinion is needed.
So sorry you were treated like that.
Love and hugs, Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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Jenni Sorry I also have these strange white patchs picked up on 2 MRI brain and fluid on the spine . And strange feeling in my leg .And i saw the nero twice who spent a good while saying no it does not come from your back sliped disks My leg goes numb or is numb in patches senvistive and hip ( muscle hurts ) very though What about trying for a other nero in a other hospital ??? though with me he checked and checked theres not a lot he can do and i am not quite in the M/S barcket Any other trouble its lumber .And nurse checked me the other day but not so bad i need to go back . So why is this stupid man doing this too you ..Its not right go for someone else as if my lot can find whats wrong with me .Then the same for you ???? with me its like i have somthing but its nothing .Its wait till it rears its ugly head .But i am checked every app ??? lazy git .he is . Chrissy The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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I can understand why you haven t been able to post earlier on this Jenni, I really don t know what to say to be honest. I just wonder how such a consultant can last so long in the NHS, but they just do as we know.
He may possibly take an negative view of rheumatoid patients, but it really does make you wonder really how he treat others, he is not a nice person, I just feel he is incompetent and wouldn t trust his judgement with any illness.
I can totally understand why you want to go private - who wouldn t after all you have gone through, you must feel their is no alternative after all this.
Thinking of you, Julia x
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