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Thread: ok off to consultant tomorrow

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    Unhappy ok off to consultant tomorrow

    i don't know if any one else feels like this???

    but i always dread going to the consultant!!! i don't know if its that whole thing it took soo long to get diagnosed so i always think theyre going to judge me or not believe my systems or the what are they going to say is wrong now or mxture of both!!

    i got an appointment 11:55 am uk time and dreading it i have written alist
    here it is:
    -burning feling in toes/fingers
    -swelling hands+feet+face
    -twitching/flinching
    -clicking
    -brain stuff- forgetfulness,headaches,staring in to blankness, hard to consintrate
    -lower back pain
    -occassions of blood urine
    -emotion up creek
    -nauses/quizzyness
    -rash on cheeks
    -glands underarm/in neck going up and down
    -dry mouth/eyes
    -lackluster/lethagic
    -pains in hand/feet
    -itchy skin
    -dry armpits
    -shakeys hands/fingers
    -breathlessness

    i know its quite a long abstract list but thought it was best just to say everything no matter how small
    i also find out blod test results including sjorn and raynauds test
    they should also be sending me for a follow up mri
    well ummm i think thats it i know i'll feel much better when its over but god i do dread them!!! thanks for letting me waffle on
    would help if any one can tell me the hand some of these things going on???
    thanks H xxx

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    Quote Originally Posted by tiggerlishus - Heidi View Post
    i have written alist here it is:
    -burning feling in toes/fingers - sometimes
    -swelling hands+feet+face - yes to the hands and feet
    -twitching/flinching - sometimes
    -clicking - no
    -brain stuff- forgetfulness,headaches,staring in to blankness, hard to consintrate - yes
    -lower back pain - yes
    -occassions of blood urine - no
    -emotion up creek - yes
    -nauses/quizzyness - no, unless I am having an IBS attack
    -rash on cheeks - yes, but mine comes and goes
    -glands underarm/in neck going up and down - no
    -dry mouth/eyes - yes to the eyes and no to the mouth
    -lackluster/lethagic - yes
    -pains in hand/feet - yes
    -itchy skin - yes
    -dry armpits - no, but I wish I had that problem!
    -shakeys hands/fingers - yes
    -breathlessness - sometimes
    Heidi,

    I think the list is a great idea. I have marked the symptoms on your list that I share. One other thing that I do with new specialists, I bring an annotated record my medical history (important labs, xrays, flare visits, medications, etc). Good luck with the consultant.
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    thanks sandy its not new consultant same one i see her well at mo every 3 months but who know after today i will post later and tell ya what she said !!
    oh and thanks for adding what you get yer my rash comes and goes and it not fully across face thou it is very sore like i been scrubing at with a brilo pad!!
    once again thanks Hxx

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    Most of us get these symptoms to here are mine during a flare

    -burning feling in toes/fingers sometimes
    -swelling hands+feet+face most of the time
    -twitching/flinching no
    -clicking no
    -brain stuff- forgetfulness,headaches,staring in to blankness, hard to consintrate yes
    -lower back pain every moring
    -occassions of blood urine have to see kidney dr for that now
    -emotion up creek yes
    -nauses/quizzyness most of the time
    -rash on cheeks no
    -glands underarm/in neck going up and down in the back of my head and neck
    -dry mouth/eyes sometimes
    -lackluster/lethagic sometimes
    -pains in hand/feet in feet not hands
    -itchy skin no
    -dry armpits no
    -shakeys hands/fingers sometimes
    -breathlessness when i do certain activities

    Just make sure you always write down new symptoms no matter how small they are. its hard but try to think positive about something it will make you feel better. stress always trigger one of my symptoms and makes them worse.

    good luck with the dr. and know we are here for you.
    Keep Smiling

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    thanks for replying gina xx

    well i have been and i'm back and feel no more helped than before i went i showed her my list and all she said was yes most is that is normal all i should do is put sunscreen no smaller than 30 factor and cover up even thou i told her alot of that was happening before the sun came to uk !!!!

    i just feel sooo fustrated she said i was looking alot better than last time she saw me thou i told i felt rough and like i could go to sleep right there and then and then to top it off she reduced te only med that has seemed to make a difference she decided over next 3 months i am to reduce my steriods from 15 to 5mg

    i just feel like i could swear scream and cry all at once i feel she hasn't listened at all was just worried about to getting to her lunch break!!

    i just feel soo tired and lonely right now but hay another day continues xx

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    ooh and i forgot to add insult to injury mentioned maybe i should join a gym!!!!! x

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    she told you to join a gym how do you do that hurting all the time. mine told me to try a pool. which there is no one close to use.

    what meds do you take?
    when i wake up i say well i woke up this morning and that is good
    Keep Smiling

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    Heidi...

    Have they prescribed anything for your dry eyes and mouth? Have you been diagnosed with Sjorgrens? There are OTC natural tears....sip H20 and lemon juice. For my eyes I use Restasis, prescription.

    Though pain, fatigue and etc is normal with the disease, then why can't they prescribe a drug to help us combat these symptoms. In reality it doesn't really seem like amything works, eh?

    Provigil is for those who work night shift, sleep apnea....for fatigue from insomnia. Provides energy...I wonder why health insurance in the US will not let doctors prescribe it for off label and cover the cost. Here in the US it runs without insurance average $300.00...I have been seriously thinking of getting a prescription for it regardless. See if they prescribe it in the UK....

    Since it appears your kidney and heart is fine..they should prescribe a duiretic like Lasix and potassium pills to rid yourself of the edema..fluid. I do that...

    I won't worry about the gym part, as being an insult because exercise in some form is really beneficial for our muscles and joints. The muscles strength will support the joints and back. But that exercise can be done at home...May seem awkward at first...but it gets easier and not so painful with each session, try...Start with a stretching DVD...or request a prescription for Physical Therapy.

    I've had three spine surgeries, for my lower back I found if I keep my stomach muscles and butt cheeks strong they hold up and support my back. My butt cheeks are always pinched tight and stomach sucked in and held tight to support my back. It is such a habit that I don't realize I do it anymore until my husband comes grabs my bum..Buns of Steel. No physical work..just tuck, pinch and tighten.

    For me swimming is the best...supports my body without putting stress on my joints. Though in pain..I believe it helps. It keeps me limber..and too it does my spirit good.

    The types of food we eat and exercise isn't thee answer but it does play a significant role in how we feel. Have you tweaked your eats?

    I am a work in progress, always tweaking..not successful everyday....

    Have they tested your hormone levels..your thyroid? Could explain the dry itchy skin too...


    Just some thoughts...ideas.

    Love and hugs.
    Oluwa
    I have Lupus. So *^#@! what.

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    thanks gina and oluwa for taking the time of replying i will write my list of meds but just woke up for a nap and still not quite with it!! lol
    no she did not prescribe any thing else just wrote down how to reduce the steriods over the next 3 months she did test me for sjorns apparently it came back ok but i just felt like she either thought i was a drama queeen or something just kept on how better i looked and how was slurring which i admit isn't happening hardly as much as it was but she was like that was the most improtant hting and every thing else on my list didn't matter!!
    i did try joining a gym and going swimming regularly but one i can't swim very well but i gave damn good try but i just got to tired it is good 20 min bus ride to town and back plus the energy to actually do the exercise it just all got to much and to expensive on benefits, so was hoping rather than decreasing my steriods she would increase them and i could start of walking again!! i wasn't bothered by the exercise it was the way she said it sounded so insulting

    and yes owula am trying to tweek my diet but very unsucessful specially on day like this i am deffo one of those who emotional eat!!!

    she test all sort of things but not sure if she test hormones will have to ask my gp!
    thanks for listening guys feel soo alone at moment i know have good friends and family just feel like i can't bother them as they have thier own lives to be carrying on with xxxx

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    Hi Heidi...head hugs...

    It is frustrating to say the least, to get geared up for an appointment. I have to psyche myself up and then only to be deflated by their...'were a dime a dozen attitude...next.'

    I too, eat my emotions. Happy, elated, mad..anytime. Especially when I am fatigued...each mouthful at the time feels like it give me a small burst of energy...but in the end all I have is a full hopper...stomach and more tired than before. Maddening cycle....

    Like now I could whoof down a dozen of cookies, sliced roasted chicken on sourdough, a quart of fresh sliced strawberries..a few bars of chocolate...washed all down with a jug of milk

    That is a trek for a swim...the journey itself seems like exercise...

    I understood about the insulting tone. My doctor told me to exercise more and don't eat processed foods. I said I do neither...lol. I enjoy my Hershey's Plain though...Raisinettes now and then..but junk rarely...oh, fried chicken is goood. He never asked what my diet is like...I eat pretty much whole foods...nor how many calories I consumed. After this last round of steroids I was on..the weight just wants to be my BFF...it seems to have moved in, no matter how many days I swim...she isn't leaving...ugh.

    Did she mention why she decreased your steroids? Abnormal test results? Did she think the drugs was contributing to some of your symptoms..dry itchy skin? By your symptoms it seems to me your in a moderate flare...

    Have you given iron pills a whirl...I supplement with 65mg for fatigue. It seemed to make a different at first, now I am really bogged down...CoQ10 is another supplement for energy. What may not work for another may work..

    I'd drink a pot of coffee, but it gives me the jitters. And after I drink a cup...a drop hard and I am more tired than before...

    I was thinking, at your appointment maybe you should mention how you feel when you leave there. I think it is important to be our own advocate and question their diagnoses, question the changes in our medication. Be frank with them..we don't have to be "their friend'....they are people who work for us...to care for us. So, they should understand being questioned. And if they don't...I would say it is my health, my body and I do have the right to know way you are making these decisions. And if that gets you nowhere...ask her, 'have you ever considered going into road construction...'

    Take a nice warm shower, rinse in tepid and lather on some lotion for you skin...and curl up to a nice movie...

    Love and hugs...it'll be alright, Heidi.
    Oluwa
    I have Lupus. So *^#@! what.

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