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tiggerlishus - Heidi
06-28-2009, 02:12 PM
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!!:wacko:

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

SandyR
06-28-2009, 03:37 PM
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 :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 :yes:
-pains in hand/feet - yes: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

tiggerlishus - Heidi
06-29-2009, 02:05 AM
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

gina
06-29-2009, 04:56 AM
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.:yes:

tiggerlishus - Heidi
06-29-2009, 05:21 AM
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

tiggerlishus - Heidi
06-29-2009, 05:24 AM
ooh and i forgot to add insult to injury mentioned maybe i should join a gym!!!!! x

gina
06-29-2009, 06:46 AM
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:yes:

Oluwa
06-29-2009, 07:42 AM
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

tiggerlishus - Heidi
06-29-2009, 09:31 AM
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

Oluwa
06-29-2009, 11:18 AM
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

tiggerlishus - Heidi
06-29-2009, 11:47 AM
ahh thanks oluwa sooo what you mean have had 2 hour nap this afternoon and demolished a tub of ben and jerrys half baked ice cream i seem to eat more when i am low, fatigued thing is when your fatigues and live on your own don't feel like cooknig a whole healthy dinner it whati grab there and then you ain't got worry about cooking and even better sometime don't have to worry about washing up either just eating it lol!! if i'm happy in a relationship and all is going good i don't tend to eat as much and even less junk food!! lol

yer i must admit i haven't dared got on scales since i been on the steriods!!
talking of steriod noo she didn't mention why she decrease steriods she said all test results were ok and she didn't even mention or ask me any questions about my list when i showed her just said most of them were normal for lupus and i looked alot healthier than i did last time she saw me i just wonder why people always i look at my healthiest when i feel at my worst !!! lol

i was put on iron tablets when i was younger but never tried them just over the counter can't do coffee i should do chocor coke allergic to caffine disagrees with me thats as far as i'll go with that lol!!

as far as next appointment i will try to be more assertive its not for another 4 months!! i seem to be able to be an advocate for others but seem to let people walk all over me it very fustrating just wana kick myself!! instead i eat icecream!!

well going to put me pjs and curl up on couch like you said but instead of film am watching me soaps lol thanks for listening oluwa xxxxx

Oluwa
07-02-2009, 01:33 PM
Just checking....how goes life today, Heidi?

Hugs with love,
Oluwa

tiggerlishus - Heidi
07-02-2009, 02:30 PM
hi Oluwa
thank you i am ok still been slighty under the weather thou got to spend some time with jane nad normsi last night which is always good ( photos will be up soon on my profile page lol)
things the consultant said still bothering me things like she was only concerned before cause she thought i had blood clots in brain but as slurring as got better not gone but better she thinks theres nothing to worry about!! i would thing it would be better to be a little bit cautious!!
well think i just bit under weather still, late on period and been feeling bit quezzy and terrible belly and back ache doing me head in!! and it is quite warm over here at mo which really ain't helping!!
any ways in very moaning miny mood at mo soo not coming on here very often emotions all up creek i'm normally such a level headed person aarrghhh
sorry sure when you asked how things were in my life you wern't expecting this thanks for caring owula xxx

abbasgirl
07-02-2009, 02:49 PM
Heidi...sorry the appt went that way. ((((hugs))))

I'm wondering why she thought there may be blood clotting. Did she run a specific test for clotting and/or order an MRI?

tiggerlishus - Heidi
07-02-2009, 02:59 PM
hi ya abbasgirl had a mri in january that came up with little white spots i also have aps and have been getting moments of slurring, losing where iwas in physical for example heading to one shop and ending up out side another witho ut knowing how i got there to having a convo with some one and going completely blank staring in to space for moments and the mri came up with little white spots but they said they were soo small they didn't know if they were anything or just a blip that day soo was going to another one but when i went back this time she blew it off as if it wasn't anything as thing on that sound have improved but only little bit but cause i was quite postive that day well untill i saw her that is and me blood are ok at mo it was like shedidn'/t want to know x
thanks for caring xx

abbasgirl
07-02-2009, 03:11 PM
Hmmm.

I'd want that second mri and a test for the clotting done. If she won't do it, I'd find someone else who will...or see a neuro. Just to be on the safe side.

I had suspected clotting in the brain. One test said there was clotting, another said there wasn't, and the mri was clean. So we're "guessing" I'm okay...even though I sure don't feel it.

I do things like that too. I spent a great deal of time on the front porch trying to remember where I was. It's scary. I haven't slurred my speech...just really forgetful and will be somewhere and trying to remember either where I am or how I got there. I hate it. Can you visit a neurologist? That's where I'm heading at the end of the month. Mainly heading there for the head/eye pain, but I plan to bring up these other issues.

I'm worried about you ....((((hugs)))) and am putting you on my prayer list.

tiggerlishus - Heidi
07-02-2009, 03:20 PM
ahhh thank you i got to be referred as in england but am debating on weather gonig to my gp and seeing what he says but yes with that and other things i'm worried about as i live on my own!!! this illness just seems to be getting harder and harder to deal with and i'm getting more and more tired to deal with it!! but hay i get up and brush my knees off and carry on as there isnot much else to do but carry on i hate this i am normally such a postive person to the point where i annoy the hell out of people!!
but thank you hugs to you too xxx

abbasgirl
07-02-2009, 03:36 PM
I just realized, beside your username it says essex england...ohhhh my mushy brain! *headsmack*

Perhaps the gp could give you a referral. I'd push to see a neuro. It's always better to be on the safe side, especially with the symptoms you have.

You're right...there's not much we can do but press on. I am starting to get used to the "moments" when I don't know where I am, it's less scary than it was, but it still makes my knees knock together.

Just when I think I can't be shocked by it anymore than I already am, something new pops up and GOOD GRAVY! lol.

I've been considering trying an experiment... the next time I share my symptoms with a specialist, that after I list them off I'll also say "but no biggie you know?... just your typical scary symptoms." Just to see if it gets an opposite reaction.

tiggerlishus - Heidi
07-03-2009, 01:27 AM
I just realized, beside your username it says essex england...ohhhh my mushy brain! *headsmack*

Perhaps the gp could give you a referral. I'd push to see a neuro. It's always better to be on the safe side, especially with the symptoms you have.

You're right...there's not much we can do but press on. I am starting to get used to the "moments" when I don't know where I am, it's less scary than it was, but it still makes my knees knock together.

Just when I think I can't be shocked by it anymore than I already am, something new pops up and GOOD GRAVY! lol.

I've been considering trying an experiment... the next time I share my symptoms with a specialist, that after I list them off I'll also say "but no biggie you know?... just your typical scary symptoms." Just to see if it gets an opposite reaction.

hehe its ok i get those doh mooments all the time!!!

but yer think i will make an apppointment on monday go see him

but i do love you comment i might try that myself !!! lol

well thank you for your comments i know i'm not alone but it is always good to see it written down xxxx

Oluwa
07-03-2009, 05:51 AM
Heidi..Hoping today is better for you...hugs.

Regarding your slurred speech and finding yourself at a different stoop, disorientated..I too am concerned.


With Dysarthria, slurred speech have they ruled out possibilities such as amyotrophic lateral sclerosis, multiple sclerosis, TIA.


Do you have muscle weakness in your face? My husband had Bell's Palsy and his speech was slurred. Look like he had a stroke...


Another cause of dysarthria is use of alcohol and certain medications, such as sedatives or narcotics.Have you and your doctor reviewed you drug regimen...about the possibility of changing or discontinuing such drugs?


Are you dosing with Gabapentin (Neurontin)...it is said it could cause memory loss, lapse in time.

These are just a few things I found..that are somewhat related to Lupus, or like it ....but all in all, you do need to be seen by another doctor. A neurologist like Abbasgirl said....don't wait...

Hugs.
Love,
Oluwa

SandyR
07-03-2009, 11:42 AM
Heidi,
I have been wondering how it went with the specialist. How are you doing today? I agree with Oluwa and abbasgirl, I think you should take your concerns to the neurologist. Does your GP know about all these symptoms in detail? I would think if they did, they would want a second MRI run as well.
I know what you mean about eating worse when you are feeling worse. Sometimes I just don't have the energy to chop veggies or stand by the hot stove and it's just easier to have a bowl of cereal or some Ben and Jerry's for supper. Cleaning is just about impossible when I am like that. Even though I am feeling better now (mostly) I am still struggling with getting the apartment back in order. Sometimes I think, oh if only there were someone else here to help me with all that, it would be so much easier, but really I think it might be so much harder too.
It's not easy to try to lose weight when you feel this way either and I have a struggle with that as well. Even though I have lost over 30 lbs in the last 2.5years (which is a major accomplishment for me) I still need to lose another 70 lbs to be in a healthy weight range. When I am not feeling well, I only have enough energy to worry about getting better and losing weight seems to take a back seat to that. I have learned not to gain back my weight when I am feeling horrible and to be more conscious about losing weight when I am feeling well. I wouldn't worry about the weight or the mess when you aren't feeling well.
Put your energy towards feeling well and then you will have more energy to work on the cleaning and being fit when you are feeling better. Hopefully, that energy will come to you sooner rather then later. :grouphug:
Sandy

tiggerlishus - Heidi
07-03-2009, 11:55 AM
ahh thanks guys no my gp don't know all the systems am going to make appointment monday quite lucky should be able to get an appointment on the day xx
yer energy is coming in fits and waves hoping it all comes this weekend as met alovely man today been talking to him on internert for two years on and off and hoping to invite him round for dinner next week soo house needs to be on top form!!
as far as weight loss did lose 3 stone last year but think i put half that back on now!! lol
but thanks for caring guys will keep you informed!! xxx