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Discussion Starter #1
Hi all,
Just a quick note to let you all where I am at.
Had started to feel a little better, then I went to a restuarant 200 yards from our home and have been layed up since that was on sat, auful pain in my hips thighs and back/neck.
Went to see NHS rheumatologist today, read my symptoms list which has gotten slighty longer! Did the push/ pulling excersises and was really studying my nails and hands(?) Then she asked me how I felt about coming into hospital - I got all upset ect and agreed, she said it is not right that for someone that is so young having what ever is wrong with me inpacting on my life as it is. She said that I will be called up within the next two weeks wants to do various tests including a muscle biopsy (I am scared) She was really nice and I felt apart from the upset of going in hospital that she didnt think I am crazy as I have thought I was turning lol! The vampires took 8 vials of blood while I was there (god Im brave!) used to faint at just one!
Anyone had a muscle biopsy?
(It turned out not to be such a quick note!)
lisa x
 

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Lisa,

Thank you for letting us know what was going on with you. It sounds like it was a really good appointment at least from the standpoint that the rheumatologist acknowledges that something is wrong and wants to get to the bottom of it. Many people spend years trying to get medical professionals to pay attention to whats wrong with them. The fact that she is arranging things so quickly for you means you will probably get diagnosed fairly quickly and that she must have seen some standard fingernail/nailbed symptoms that confirmed to her something in her field is likely the culprit.

In the USA they do things a little differently and we don't go into the hospital for tests. Instead we get tests scheduled with the various specialists that do them and go to each place on the day of the test(s). For instance a week ago I had a ct-scan of my lungs at an imaging center that is connected to a hospital.

Do you have friends and family that will come visit with you at the hospital? I know from my hospital stay following surgery it is kind of nice to be "pampered"; having meals brought to you, not needing to worry about getting dressed and so on. Do you have a laptop computer?

I have never had a muscle biopsy but I am sure someone will be along to share their experience with you.

take care,
Karen
 

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Hi Lisa,

I'm really pleased that they are going to try and get to the bottom of all this for you - it's an excellent move forward :hugbetter: I know it must have been a shock for you though.

I spent a lot of time thinking they havent found anything definite yet, so when I finally went to someone who acknowledged we needed to get to the bottom of it I was flabbergasted! It kind of brought me back to reality about just how much I had been suffering and that finally someone was going to sort it out. A reality check if you like.

Good luck with all your tests, I havent had a muscle biopsy but I'm sure someone here has. Do let us know how you get along and in the meantime we will be thinking of you and hoping for some quick answers and relief. You sure deserve it.

love
Lily
 

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Hello Lisa,

I just wanted to say that I'm really glad you are being taken seriously and that your doc is determined to find out what's up.

I have only ever had skin biopsies, so not quite the same though I know that my Mum's dermatomyositis was diagnosed through a muscle biopsy.

I hope it goes well for you,
Katharine
 

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Discussion Starter #5
Yes guys is all very possative news knowing that im being taken seriously.
Katherine I think that the doc was looking at dermatomyositis as he tested for ovarian cancer which coinsides with it, luckly my ovaries are fine, does antone know why they would be testing my DNA as that was the only one I remembered on the list of bloods they did yesterday?

Lisa on call! x
 

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Hi again Lisa,

I should imagine that it is anti-ds dna they are testing which is a more specific test for SLE than the ana test which is bascially a screening test for various auto-immune possibilities.

It just sounds like they are looking into everything auto-immune which is great.

I'm not very good at all the techy stuff, so I'm afraid can't help more than that.

Katharine
 

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hi lisa

just wanted to wish you lots of luck with all your tests & I hope your stay in hospital is as pleasant as it can be.

I am glad to hear you are being taken seriously & I hope you finally get some answers.

take care & please keep us updated.
sending you big,positive hugs :hug: :goodvibes:
karen x
 

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Hi Lisa

I havent had a muscle biopsy so cant help you with that one. Maybe if you dont get too many replies about this you could start a separate post in Tests & Procedures asking for info on Muscle Biopsies? It might catch someones attention as they are scanning through posts.

The very best of luck with your hospital stay. Im glad that your doctor has taken this seriously and here's hoping it's the start of a road to good treatment for you.

Take care
Joan:rose:
 

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((( wow lisa ))))
so pleased for you, they are listening to you.....was wondering the other day how you were :) this is all good, pretty much what they did with me. don't worry let them do what they have to... you will be alright, you are a stronger lady then you think.....
big hug for you
take care... lets us know how you get on:)
 

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Lisa, Wow!!! it sounds like you are going to get the royal treatment, and for that I am so very happy for you. I do wish we did that here in the states. One thing is for sure, you are with a dr. that really cares, how wonderful. We can't wait to hear your results. Hugs and smiles/
 

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Discussion Starter #11
Thanks guys for your replies,
Gosh I dont know what I had of done without you all, I will keep you all posted, when we got home from the oppiointment James said you should post and let you all know, he has been my rock thses last few days think it finally hit home with him ( I am good at pretending to be ok!) god knows why I was kidding myself I think.
I am ready, bags packed!
Take care all,
Lisa xxxx
 

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Hi Lisa :wavey:

I just wanted to wish you all the best :wishes: and i hope that they manage to get to the bottom of everything for you whilst you are in hospital.

Its not nice having to stay in hospital but sometimes needs must and i think that it will be for the best so that they can carry out all the tests they need to instead of booking each test individually and it taking months (knowing the NHS).

:getwell: I sure hope you start to feel much better real soon and good luck. Let us know how you get on.

Take care :hug: Jo :hug:
 
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