| Author |
 Topic Search  Topic Options
|
BarbieGirl 
Newbie
Joined: 12 October 2009
Location: London England
Online Status: Offline
Posts: 23
|
 Quote  Reply
 Topic: diagnosis?
Posted: 06 November 2009 at 11:32am |
Hi everyone, just wondered about my diagnosis, when I saw the consultant in July he looked at my x rays, and said, "lets call it RA" and then started me on methotrexate. He gave me no information regarding mxt, only a booklet, also when I collected the prescription from the hospital pharmacy, I was asked how often I need to come back for blood tests. I wasnt even told I needed to!! I then had to go back to the clinic to arrange this.
My next appt with a junior doctor was much better, he was asking lots of questions, and did more tests, asking me about rashes, photosensitivity, eye problems etc.
I realise that this was symptoms of lupus. My next appt is not until Jan22nd. I saw my GP, who said she feels I need to go sooner, as symptoms are not being controlled, I am on 12.5 mg of mxt, 100mg tranamadol x 4 and paracetemol x 4. This doesnt help, my feet are agony all the time, and I have to do alot of walking as I care for 2 babies. The clinic know what I do, and never question it, but ,my GP says she is surprised they havent asked me to cut back on hours etc.
As nothing was really explained initially, I am very confused now as what to ask, if I get another appt earlier, mainly due to the pain and fatigue etc. how do I begin to explain that I am concerned about the diagnosis?
I find it hard to speak to the nurses, they seem to take everything very lightly, and just say to wait and see.
If anyoe has any ideas and suggestions I would be very grateful. Thank you 
|
|
Barbie x
|
 |
leila
Senior Member
Joined: 08 December 2008
Online Status: Offline
Posts: 353
|
Quote Reply
Posted: 06 November 2009 at 12:53pm |
|
I think you should write down your questions and concerns and bring them to your next appointment. (Maybe you could get on the cancelation list.. Then the office staff could fit you in if someone cancels.) That way you could be sure to ask all your questions. I think it is fine to ask what your diagnosis is and why they feel that is the appropriate diagnosis.
Good luck,
leila
|
|
kweenb
Senior Member
Joined: 20 June 2006
Location: Indiana
Online Status: Offline
Posts: 1368
|
Quote Reply
Posted: 06 November 2009 at 12:57pm |
|
Barbie,
I'm sorry you are having a rough time. You didn't say when your appointment was with the junior doctor. Did you discuss the fact that the MTX wasn't working? I would call them back and leave a message that you are in agony and ask if you can up the MTX or add something else. You could also ask for a sooner appointment. Ask if they can book you an appointment if someone else cancels theirs.
Hope you feel better soon.
|
|
Enbrel, Plaquenil, Relafen, Lortab
|
|
waddie
Senior Member
Joined: 10 October 2008
Online Status: Offline
Posts: 1559
|
Quote Reply
Posted: 06 November 2009 at 2:16pm |
Barbie, I am sorry for your pain! My RD's office is busy and sometimes getting in prior to an appointment is difficult. She does have email accessibility though, maybe that is an option? If not, I would keep trying, maybe asking your PCP for aid in getting in quicker or a referral to another RD? I sure hope you can find some relief sooner than Jan., that is a long way off when you are in pain. Best to you, Barbie, sometimes we have to really fight to be heard.  Waddie
|
 Never give up, never surrender!!!
|
|
Spelunker
Senior Member
Joined: 08 March 2009
Location: At home.
Online Status: Offline
Posts: 1996
|
Quote Reply
Posted: 06 November 2009 at 2:41pm |
Originally posted by BarbieGirl
... started me on methotrexate.
...
My next appt with a junior doctor was much better, he was asking lots of questions, and did more tests, asking me about rashes, photosensitivity, eye problems etc.
I realise that this was symptoms of lupus. |
Hi Barbie, asking those same questions can be an evaluation of MTX tolerance and response.
How much MTX are you currently taking? Are you also taking supplemental folic acid? Are you taking anything for the pain? Did anyone suggest a course of exercises to keep your joints functional and your range of motion optimal?
Some of the questions you might want to ask begin with understanding what your most recent laboratory tests reveals such as you haemoglobin and haematocrit, your ESR/sed rate, your LFTs to start with. In your position I would also want to know what the x-rays demonstrated that lead to the original diagnosis and inquire when a set of films for comparison will be taken. I would also ask about the benefits of high dose fish oil and request a referral for physical therapy and/or occupational therapy.
I too suggest that you either make a sooner appointment or request priority on a cancellation list.
Meanwhile, keep a daily journal of how you feel, what makes you feel better or conversely worse. There are several online sites that offer journal pages complete with check boxes for signs/symptoms, levels of discomfort, etc..
Best wishes for a speedy resolution. Shug
Edited to say sorry! I see you are on pain meds. Like Lindy, I am just going to blame it on the pred.
Edited by Spelunker - 06 November 2009 at 2:45pm
|
|
Do not merely survive: thrive.
|
|
janiefx1
Senior Member
Joined: 09 May 2009
Online Status: Offline
Posts: 350
|
Quote Reply
Posted: 06 November 2009 at 3:52pm |
Hi Barbie girl, I hope you find some answers, is there another RD you can see for a second opinion? Good luck from Janie.
Shug, hi, how are you feeling, I hope you are having a good day today! I was wondering if you could give me some idea which websites offer these, thankyou, Janie.
Written by Shug. Meanwhile, keep a daily journal of how you feel, what makes you feel
better or conversely worse. There are several online sites that offer
journal pages complete with check boxes for signs/symptoms, levels of
discomfort, etc..
Edited by janiefx1 - 06 November 2009 at 3:53pm
|
|
Sam1234
Senior Member
Joined: 22 October 2009
Online Status: Offline
Posts: 129
|
Quote Reply
Posted: 06 November 2009 at 4:00pm |
The "consultant" and "junior doctor" are both rheumatologists??? If not, GET A RHEUMATOLOGIST.
As someone who has been on MTX for about 15 years, I can tell you that your blood work should be checked monthly in the beginning, and as your disease is stablilized/controlled, quarterly blood work is usually sufficient.
Tests that should be run EVERY time are CMP [complete metabololic panel], ESR [though I've found the results never match my level of inflammation and think this test is a waste of time, for me, at least], CBC with manual differential, and liver function test.
You said you were on Tramadol.
You should be taking 1-2mg Folic Acid daily.
Keep pushing these people and call every morning to the rheumatologist's office to see if there's a cancellation. Sad to say, but if you keep pestering them they'll probably take you seriously and get you in.
Good luck!!!
|
|
Spelunker
Senior Member
Joined: 08 March 2009
Location: At home.
Online Status: Offline
Posts: 1996
|
Quote Reply
Posted: 06 November 2009 at 5:57pm |
Originally posted by janiefx1
I was wondering if you could give me some idea which websites offer these, thankyou, Janie.
|
IIRC Snow Owl posted several links not too long ago and JasmineRain has posted her personal page several times. I apologize for not have those immediately to hand and further for not having the strength tonight to do a comprehensive forum search to find those posts. A google search turns up >>THIS<< selection. A couple I have bookmarked: http://www.cancer.org/downloads/MON/pain_diary.pdfhttp://www.painworld.zip.com.au/downloads/pain_diary.html
|
|
Do not merely survive: thrive.
|
|
BarbieGirl
Newbie
Joined: 12 October 2009
Location: London England
Online Status: Offline
Posts: 23
|
Quote Reply
Posted: 07 November 2009 at 7:11am |
Hi everyone Thanks for your replies. I do tke folic acid, 5mg once a week. I am curently keeping a symptoms diary to take with me, and yes both doctors are rheumatologists!! At my last appt I had a list of things, but they didnt look at it, they said it would all be covered by the tests they would do.
I have fortnightly tests, ESR etc., the ESR is always high, I asked the nurse what results I was getting, as I never get told, and she said "oh, some inflamation present" I told her I am in constant pain in feet and hips, with hands also giving me alot of pain. I got no reply.
My GP is meant to arrange an earlier appt, but maybe I should call them too, I need to know whats going on,espeially as working is becoming impossible, and not getting any answers.
i just feel that the clinic are not interested in what the problems are, just so long as they are giving out meds of some sort. I feel really down right now, trying to carry on as normal and continue doing everything, and just being told to give it time. Thanks everyone, |
|
Barbie x
|
|
lorrie
Senior Member
Joined: 12 August 2006
Location: Aus
Online Status: Offline
Posts: 218
|
Quote Reply
Posted: 07 November 2009 at 2:16pm |
Barbie, as well as the mtx, are you bein prescribed some anti-inflamm. meds such as Celebrex, Naproxin, or something like that?
Hope you get some answers soon and better treatment, tho it sometimes takes time for docs to find just what works best with any particular patient. But, you do need to have health workers who take an interest in trying to help you. I was fortunate when first dx'd, but did eventually learn that I had to do some research myself. Sites like this are so good and where I found most of the useful information!
Lorraine
|
|
"The swords of battle are numerous, and none more effective than humor" - Stephen Jay Gould
|
|
