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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hello all
i have been to emergency rheumatology today and saw my nice young and lovely snr registrar.
RA wise, things are very much improved and he was clearly moved to see me feeling and doing so well. I really must look facially like a new woman. Plus I can move, joint pain much less and I FEEL SO WELL. Blood results RA wise are dramatically improved.
Problems are anemia increasing and you would expect to see that improving if it to do with stomach ulcer/ Immune disease. GP is investigating this although I note that anemia can be a problem on the CIMZIA but it can on any of the drugs really and of course we all know what a horrific speedy course the uncontrolled severe disease did to me insides...
The most serious dealt with today are the neuro issues.
He did a thorough examination- I did do a list of symptoms ones that have been in place since the RTX (they seem to accept now that neuro problems can be caused by the rtx which is something that has come through more rheumatology use of the drug I think) and the ones that have increased and are new.
Symptoms basically are- rigid muscles, sudden tightening spasm in the muscles the glowing red of the shins which are now discoloured. Feeling like I am poised for a run, strange sensation in my finger tips (everything feels silky) and the weakness in my forearms and legs. Agony and not knowing where to put myself from the burning in the legs particularly.
One single nerve in the left of my face is effected which makes the side of my lower nose and left side of the lips droop from time to time. Plus they feel odd like I want to bite and poke them! Strange eh?
Anyway he is going to go through this with the Big Chief when he is home from Holiday on Monday. I will need some nerve conduction studies almost certainly. I will probably be fast tracked to see the musculo- neuro specialist at Wessex Neurology Unit. It depends really what Big Cheif says.
The hard lumps in my muscles are recognised now and my legs are certainly looking different, where the neuropathy effects mostly compared to the less effected, starting to be effected parts.
I could feel most of his touch when did the touch test but nothing at all on the left lower leg which is concerning as I certainly could (not properly but could feel it) a month ago.
He was so positive about the RA side of things and was keen to get the neuro things resolved or at least contained if there is a way of continuing the drug.
Trying to feel more perky about things.
Love
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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Good to see that they are going to investigate thoroughly now Jenni. Hope you get the neuro appointment soon and fingers crossed that they can resolve this for you without having to stop the Cimzia. Love, Doreen xx PS Jean and I will be quite happy to accompany you the next time you see this "young, lovely registrar". 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Jenni
Oh that does sound more positive. It is a relief that the Cimzia is working so well. To get assurance from a lovely doctor is, I am sure, more than half the battle.
I hope they get your neurology bits sorted then you may be able to enjoy some quality of life.
Keeping my fingers crossed for you.
Take care
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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Glad he did a good exam Jenni. Hope he gets some interesting and useful insight from Big Boss.
Have a nice weekend, xfx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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 Sounds good jenni apart from neuro bits, pray u get that appointment nerve test done asap. think we all queuing up visit your lovely rheumy registar. hugs melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Really good news Jenni that all went so well this morning. It makes such a difference to the overall scheme of things when you know you are in the right hands, and are receiving the best level of care. As we know stress always makes things worse, and I m sure when it goes the other way and you have a level of contentment, it only helps to improve things and cope that much better. Have a good weekend Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, sounds like a really good appt, just need the neuro stuff sorted now. Let's hope the appt comes through fast, have you had the nerve conductiont tests before? Take care, x x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hope you get very fast-tracked to the neuro person, Jenni, but so pleased the cimzia has made such a difference to your RA. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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How good is it to have such a supportive rheummy and it's very good to know that the RA is being conrolled(in part) by the Cimzia.
The neuro stuff is much more of a concern, and I really pray for this appointment to be fast tracked.
MUCH love to you all
Jeanxx
Sending Gem's birthday stuff off on Monday, so it should arrive in good time for the first.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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I think this sounds like a positive appointment and it is fabulous you're doing so well on the C.
Will say big prayers that all the neuro probs can be sorted..
God Bless!
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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So glad that you got to see a real human being Jenni - hope the Big Boss is as good on Monday. Take care and have a lovely weekend.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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I'm glad that you had such a good appt, and hope you get to see the Big Boss really quickly.
It's good that the RA is such a lot better, and you are feeling well with the Cimzia.
Hoping things get going quickly.
Love Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
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Hi Jenni,
Very pleased to hear you have had such a good thorough appt - well done, nice young Rheumy! I hope you neuro problems can be properly identified and remedied.
Take care Nina x
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Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009
Posts: 35
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Hi Jenni, I have not been on the forum for a long time and had been wondering how you had been getting on. I am really pleased to see that things are encouraging from an RA point of view at least - fingers crossed for some progress in other areas. Jo 
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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 Thank you so much for thinking about me when you have so many problems of your own going on. I have only just caught up with recent weeks and am saddened to learn of these neuropathy difficulties and the anaemia. Good that you have had a speedy referral and fingers crossed that talks with the Top Man will illicit some progress. Sometimes I think shoving us in a sack and gentle shaken but not stirred might help, especially when we reach the stage of "what next?". Thinking of you Jenni and hoping good news is on its way soon Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Jenni, So glad you have had such a good response to your new drug, I truly hope you get some positive good news from the new consultant you are about to see, hopefully as soon as possible. Have a lovely weekend and love to you all. Lorna x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Great to know you getting on so well - Good news
Rose
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I have rung the rheummy nurse and asked whether I can have the Cimzia.
No one knows.
They will ring back. well they havent and I am due to have it tomorrow.
Will have to try again in the morning....
Ugh
jenni xhow to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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What a flippin pain it is.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Sending hugs and positive vibes Jenni - I hope they say yes.
Julie
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