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View Full Version : Rummy visit update, Back on the Imuran & lower pred since w.b.c. went back down



~LUVMYFLOWERS~
02-12-2011, 04:31 AM
Hello, hope all is well, Went to my local reumatologist visit the one that is treateing me from the treatment orders that the lupus specialist in jackson,ms
has sent her on his treatment plan for me, when he diagnosed me with the cns sjogrens, and sle lupus back in december of 2010. She is the rummy that scared my when my white blood counts shot so high a few weeks back and i got so sick with the yeast and weakness and jerked me off all my imuran and
predisone except for left me on 20mg pred a day, and told me to go to my family g.p. if i was no better in a few days . Any way i went and as i told you all my g.p. checked and my wbc had droped and it was the high dose pred that did it. And he was not to happy about it and give me a b-12 shot to help my body recoupe and said that was a little to much pred with the imuram for my body as sick as i was.

Went through the most horrible pred withdrawal's and it throwed me in the worst flair i do belive ive ever had, fevers, mouth ulcers, severe pain, weakness, even the ryanuads is joining in the flair! LOL!!!
Took hubby with me yesterday to have us a meeting about what was going on and how sick it had made me and she was going over my records and must of saw something in there from the reummy in jackson ,ms wanting to
know why he had not been getting any reports on the treatment plans he had sent for her to do on me and fax them back to him as my brain disease
is progressing fairley fast due to what he sees on 2 mri's about 4 month's
apart.
Well she ask had i had the neurologist called about my neuropsychological test that the lupus specialist had ordered 3 months ago for me to have to help
him with my treatment plan and he needed to see how much brain dammage i have so far from the cns sjogrens to give him a starting point there fore to know if the pred & imuran was helping to slow it or to go to the mtx drug's
or even last option brain biopsy and to help him figure what type of cns vasculitis i have.
I told her no still waiting and fighting with ins company the one they picked wasent in our provider plan, so i gusee her nurse just give up on it ,
She was also supose to make me an appt with a new neurologist around my
area for my cns vasculitis and had'ent done that either. As the other one i had in N EW ORLEANS @ TU-LANE had a heart attack and he dosent specialise in cns brainn diseases.

So any way she got her nurse on the phone to calling Jackson univeristy
and got me an appt set up to go for the neuro 8 hr brain test i belive the 25 of Feb and also while we were in there her nurse was waiteing on a call back from the university for an appt. with a neurologist there that specialises in
rare brain diseases due to lupus,or sjogrens or vasculitis, I say THANK GOD!!
She also uped my imuran to 100mg a day insted of the 50mg, so im on
20mg prediosne now and 100mg of imuran. Also tryed to give me more
antidepresent's on top of that wow! told her i was already takeing 2 antidepresents i didnt want any more to mix with what i had, If the dr's had to deal with what we have to with these diseases and extra burden of chaseing them down for apointments and doing there job too!! They would be
depressed too! LOL!!!!!!!!!!
They are to call me back with the rest of my appt's with new neurologist
as the nurse was still on the phone as we left waiting for my appt.

The lupus reumatologist in jackson wanted these test done like 2 month's ago as he was only giveing me 30 day's on the imuran & 40mg pred then he wanted another mri with dye to see if the med's were slowing the disease,
if not he would have to go to more toxic meds , would be the mtx drug maby
or the brain biopsy? So by what he was saying im very bad off as of the brain disease progress and yes im scared , I dont want to wake up and not know my hubby or who my grand kid's are. I even ask him how long i had with this brain disease to still kinda know what i do now and and how long it would be that i may not even be able to tend to my own self.
And you know they wont ever give you an answer, So by him giveing me 30 or more days for the meds to work and kinda reading betweene the lines
the reumatologist in my area that he faxed all the treatment plans & diagnosis to should of done been on the ball with what he wanted done,
so im getting some where now.
Ive only been back on the 50mg imuran for 5 days now since getting pulled off it, it is makeing me naushus , so ill take the other 50mg when i go to bed to try & sleep through the naushus maby!!

Sorry so long post!!! Love you all dearly!!! Thank's so much for being here
and careing and guidance!!!!!!!!!!!!!! In this roller coaster of a ride we have
with all our different auto ammuine diseases!
Big Hug's to all !! And hope you all have a pain free day and a Great Weekend!
~ DIANE~

debbie-b
02-12-2011, 05:35 AM
Wow what a journey.
I am so sorry, you have to go through all this.
Thinking of you and wishing you the best.

Debbie

Peridot_Gem
02-12-2011, 06:31 AM
Hello Diane,
I am glad your husband attended with you and by what i've read mate, there's to much cocking up with you. Seems to me like they're not letting one another know properly what's going on just the same as this end.
Lets hope the amount she's put you on now works out correctley and i've never know two lots of anti-depressants, here in the uk it's just one lot and if you get no benefit from them they move you onto another, christ she'd have you drugged up with all problems going if she could by the sounds of it.
I am sorry to hear the nausea is affecting you bad but ah it annoying when they won't give you just simple answers to what you want and like i said i mentioned this to that GP who stood in for my doctor and he said as long as you have systematic lupus they will never commit themselves well to me why be in the job.
Diane i am really truely sorry it's progressing but i just hope they can find out what vasculitis is doing it to your brain, for you and your hubby.

Thinking of you dearly diane & i do hope they can sort something for you mate. xxxxxxxxxx

tgal
02-12-2011, 12:02 PM
Good luck with everything!!! We are here for you as you make this journey. (((Hugs)))

magistramarla
02-12-2011, 05:03 PM
Diane,
I'm so glad that the docs are finally getting on the ball with you. Keep dealing with the one at the university, even if you have to go further away for the appointments. I think that the local yokel docs are just used to dealing with the little old people with arthritis and they really don't know what to do with a challenging case like one of us.
Keep us informed on what happens.
Hugs,
Marla

~LUVMYFLOWERS~
02-13-2011, 04:27 AM
Hi Debbie, Thank you for the good wishe's! Yes this is one journey
that I hope not to ever have to travel again. And I know there are so many
people thet are just like me and have to go the some journey with there
doctor's and there disease'es that when they have so many of them
overlapping, and that mimic so many other diseases.
Thank's and Wishing you a great day!!!!! ~ Diane ~
Wow what a journey.
I am so sorry, you have to go through all this.
Thinking of you and wishing you the best.

Debbie

~LUVMYFLOWERS~
02-13-2011, 04:34 AM
Thank's so much mari, You have been a blessing and to me & comfort
since i first found this wonderful whl forum way back when
i was officialy diagnosed and had no one to talk to that was giong
through the same thing as i with the lupus,sjorgrens etc,.
Hug's to you!!!! And have a great weekend!!! ~ Diane ~
Good luck with everything!!! We are here for you as you make this journey. (((Hugs)))

~LUVMYFLOWERS~
02-13-2011, 05:01 AM
Hello Terri, Thank's and yes I cant even drive any more becuse of the dizzy head and off balance
problens and have lost the since of judgement to drive. So my hubby takes me
to nearly all my dr. appt's to help ask questions and rember waht plans and meds are next
and to help me scold dr's when ther not getting on the ball with what there supose to do.
As with the short term memory cause of the brain disease soon as the dr's tell me something
if i dont slow them down with there talking so i can write it on paper to rember later, as
soon as i walk out of the office i dont rember what dr' said.
And yes she was not letting the other dr' know the progress of his order's as her nurse is
the one that was to get all my appt's in order and new test and call me back with them
and when my rummy sat down and was going over my medical files she must of saw the fax from my other specialist in jackson, cause i never saw tham get jumping like that before
and was still on hold from jackson awateing my app scedual as i left.
It's about time they get off ther butt's i saY!! LOL!
Here in the U.S. Most dr's will throw all kind's of antidepresent's at you as it is the
pharmasutical ? cant spell that one! Companeys that push the drugs on the doctor's, and the doctors give out free samples, girl she had me a bag full of free samples of this new antidepresent Prestique? and the doctor's get a kick back on writeing prescriptions for them!
Or something to that affect. And im kinda scared of all those new anti depesent's. Then after
she brought the new antidepresents to me she changed her mind! And said well (I BETTER NOT GIVE YOU THE'S YET, BECUSE IT WILL INTERFEAR WITH YOUR BRAIN COGONITIVE
FUNCTION TEST!) She just dont know what she's doing with me or how to treat lupus and overlaping disease paitent's. I think SHE only has rumatoid arthritis paitents and im her
only lupus,sjor,ryanuad's and cns vasculitis paitent and im gonna have to go back and
continue to see my lupus specialist at the university from now own!
Lot's of love to you & Hug's Terri!!!!!!!!! ~ Diane ~
Hello Diane,
I am glad your husband attended with you and by what i've read mate, there's to much cocking up with you. Seems to me like they're not letting one another know properly what's going on just the same as this end.
Lets hope the amount she's put you on now works out correctley and i've never know two lots of anti-depressants, here in the uk it's just one lot and if you get no benefit from them they move you onto another, christ she'd have you drugged up with all problems going if she could by the sounds of it.
I am sorry to hear the nausea is affecting you bad but ah it annoying when they won't give you just simple answers to what you want and like i said i mentioned this to that GP who stood in for my doctor and he said as long as you have systematic lupus they will never commit themselves well to me why be in the job.
Diane i am really truely sorry it's progressing but i just hope they can find out what vasculitis is doing it to your brain, for you and your hubby.

Thinking of you dearly diane & i do hope they can sort something for you mate. xxxxxxxxxx

~LUVMYFLOWERS~
02-13-2011, 05:13 AM
Thank's Marla, I am too so glad ther finaly getting on the ball with thing's. It's a shame
you have to push them so to get any kind of treatment and just to do there job there suppose to do. And yes Marla i do agree with you I've been telling my hubby i bet im the only
lupus overlapping paitent she has! Plus she is very young not long been out of reummy school
to add to that. So from now on i will go the university to see my rummy lupus specialist
for all my treatments and care . And your right even though it's a futher drive ,It is so
worth it for my health bennifit's. Not counting it's a teaching hospital and any
kind of specialist you may need is there be it rare or not, And if the dr' is not sure about something going on they will get together with the other dr. colegues in the hoapital
the specilise in whatever it may be and have a meeting to figure it out!
Lot's of Love to you Marla!!!!! Have a great weekend!!! ~ Diane ~
Diane,
I'm so glad that the docs are finally getting on the ball with you. Keep dealing with the one at the university, even if you have to go further away for the appointments. I think that the local yokel docs are just used to dealing with the little old people with arthritis and they really don't know what to do with a challenging case like one of us.
Keep us informed on what happens.
Hugs,
Marla

Peridot_Gem
02-15-2011, 07:51 AM
Hello Terri, Thank's and yes I cant even drive any more becuse of the dizzy head and off balance
problens and have lost the since of judgement to drive. So my hubby takes me
to nearly all my dr. appt's to help ask questions and rember waht plans and meds are next
and to help me scold dr's when ther not getting on the ball with what there supose to do.
As with the short term memory cause of the brain disease soon as the dr's tell me something
if i dont slow them down with there talking so i can write it on paper to rember later, as
soon as i walk out of the office i dont rember what dr' said.
And yes she was not letting the other dr' know the progress of his order's as her nurse is
the one that was to get all my appt's in order and new test and call me back with them
and when my rummy sat down and was going over my medical files she must of saw the fax from my other specialist in jackson, cause i never saw tham get jumping like that before
and was still on hold from jackson awateing my app scedual as i left.
It's about time they get off ther butt's i saY!! LOL!
Here in the U.S. Most dr's will throw all kind's of antidepresent's at you as it is the
pharmasutical ? cant spell that one! Companeys that push the drugs on the doctor's, and the doctors give out free samples, girl she had me a bag full of free samples of this new antidepresent Prestique? and the doctor's get a kick back on writeing prescriptions for them!
Or something to that affect. And im kinda scared of all those new anti depesent's. Then after
she brought the new antidepresents to me she changed her mind! And said well (I BETTER NOT GIVE YOU THE'S YET, BECUSE IT WILL INTERFEAR WITH YOUR BRAIN COGONITIVE
FUNCTION TEST!) She just dont know what she's doing with me or how to treat lupus and overlaping disease paitent's. I think SHE only has rumatoid arthritis paitents and im her
only lupus,sjor,ryanuad's and cns vasculitis paitent and im gonna have to go back and
continue to see my lupus specialist at the university from now own!
Lot's of love to you & Hug's Terri!!!!!!!!! ~ Diane ~Hello Diane,
I bet it must be so flustrating not being able to drive but it's lovely how your hubby stands by you mate and glad to hear he spoke up also. they need some telling at times.
So the brain condition is making you slow down to the extent where normal chatting can't register in one go, i do have my moments but they usually hit me more seizure time.
It just goes to show pure neglect and like marla said they are dumb struck with cases like us on the site, they only study the disease that's what makes me mad, then they try to play god untyil it gets out their hands and the next thing you know you being throwed backwards and forwards plus any old meds will do.
My last neurologist before i attended the brain surgeon at the QE, i told him straight i might be ill but i ah no gunnie pig for you lot.
Diane that's all wrong about the anti-depressents because they can make your nervous system ill and cause all problems, it's a good job they're strict about it here. (diane you be careful mate with how ill you are and what she wants to push on ya)

Well if she only practices with certain illness's she should'nt be seeing you, it's only when i went to see my rheumo specialist instead i end up seeing the blood specialist and for half the questions he kept popping next door the man himself, i ah joking at one stage i asked him if i could pop for a fag.lol christ knows what he thought of me.

Well how you feeling today with the nausea and is your weakness still as bad.

Thinking of your loads mate, Hugs & Kisses to you xxxxxxxxxxxx

~LUVMYFLOWERS~
02-17-2011, 06:42 AM
Hello WHL Family!
Giveing you an update on last rummy visit! Our serious sit down talk, and what she must of saw on my files as my specialist in the university had to of faxed her wanting to know why all his
orders and test he instructed her to do on me were not done and he had not gotten any results on me for any of those since last december!
So bless goodness her nurse called me the next day with all 3 appt's and i missed the call .
But she left me a voice mail telling me about my appt's and the dates. So i called back to get them and had to hold as that's nothing new, I told the reciponist i would just hold for her and was not hanging up as it was very ergent i get my appt's as they were for my brain disease and already past due.

So in a minuite my rumatologist got on the phone her self! Wich is very unsual!! My lupus specialist at the university must of chewed her butt good. I say it's about time, any way
she give me all 3 of my DR. appt's AND I will have all of them at the university, not here localy
Have my NEUROPSYCHOLOGICAL EVLATION Test on Feb 25th, that lupus specialist wanted done
before i started my med's to provide him data of the dammage my brain disease had already caused to give him a starting point and to help with my diagnosis and effective treatment plan.

My New Neurologist specialist @ the university I will see on march 3rd 2011. As i will have to have one for the rest of my life with my brain disease.

March 31st Appt with my reumatologist specialist at the university for the results & hopefuly
a diagnosis of if it's sle lupus, cns vasculitis caused by the sjorgrens that has gone to my brain
and hopefully a better prognosis than i got the first time he saw me!
So from now on I will be seeing all my dr's at the university as with the cns vasculitis it is very rare and there is no dr's close around where i live that knows any thing on it.
And waiteing on my local rumatologist to do what the lupus specialist had ordered her to do
has surley caused me more brain damage as im haveing a time with it, and has gotten worser since last december,includeing balance issues, speach problems. and nerve dammage in my legs
I have surley learned my lesson.
I dont think half the rumatologist know what to do with those of us that have the seriousness
of when the lupus, or sjogrens, or ryanuads attacks out vital organs and when we have so manny of the autoammuine diseases overlapping, They surley need to studdy more of the
complacations of the diseases other that just arthritis!
I know i have went through 3 rumatologist, and 2 neurologist and left them all scratching there head's, saying possible sjogrens, lupus, poss scleroderma, and positive ryanuad's, and the last
neurlogist after all his test thought maby a mix of M.S. with the others till lumbar punct came back neg for MS,Then he walked out the door and said, I think were dealing with a brain disease
that is from the sjogrens or poss vasculitis.
Big Hug's and Love to all!!!! WISHING YOU ALL A PAIN FREE AND A GOOD DAY!!!
Thank's so much for being here for me on my roller coaster of a ride! ~ Diane ~

tgal
02-17-2011, 07:17 AM
Hi Diane,

While I am sorry for all you are going through medically I am so glad that they are FINALLY moving you down the right road! This topic is happening on another thread but I really believe that I get better care with my PCP then with all the specialists simply because they stop caring about anything not in their specialty. It is almost impossible to get a complete diagnosis when they do this!

Thanks for the update and we will be waiting for more

magistramarla
02-17-2011, 11:57 AM
Diane,
This is such good news for you!
Your roller coaster ride sounds so much like mine. I also had a neurologist who was just sure that it was MS until the lumbar punch results came back normal - then he dropped me like a hot potato!
I have a lot of the same things that you have - a dx of an overlap of Lupus, Sjogren's, RA, Psoriatic Arthritis, with Raynaud's, AVN, Meniere's (or Autoimmune inner ear disorder), and Spasmodic Dysphonia thrown in for good measure. I've also complained about the muscle pain, balance problems and peripheral neuropathy, but the docs don't want to even address those, since the tests came back as normal. Whenever I suggest CNS Lupus or Sjogren's as the causes of this, they nearly laugh at me. Both the neurologist and my most recent rheumy have told me flat-out that Sjogren's is "only dry eye and dry mouth and is easily treatable".

It is amazing that these specialists haven't got a clue!
I'll be very interested to follow what you find out in the coming couple of months. Keep us informed.
Love and Hugs,
Marla

Peridot_Gem
02-17-2011, 04:45 PM
Hello Diane,
I hope you've had a better day mate and not to bad with the muran because that as been making you bad.
Oh Diane i am happy they've finally sorted your appointments mate and hopefully things can get moving to help you quicker, as you deserve it with the amount of messing about that's gone on and good of your professor for giving her earache.lol
Diane the lots sounds great news and your appoiments all not to fare away and fingers crossed mate they can finally get to the bottom of it, to put your mind at rest because constant worry wow help for a start off as you know.

Well diane what ever they find out mate, as i've told you before i hope to god it's not the C and MS as that's all you need but i am chuffed your finally getting somewhere and they can stick to it.

Thinking of you dearly mate and hoping today as'nt been to cruel to you.

Loads of love xxxxxxxxxx

~LUVMYFLOWERS~
02-18-2011, 04:24 AM
Thank's Mari,
Ill have to look for the other thread your speaking about.
And IM surley with you on your personal PCP being more knoledgeable on our
autoammuine diseases, Than the rummy's! My PCP that ive been seeing for 25years or so
told me i had lupus and scleroderma several years ago. and when all the others
started overlapping in and my rummy said well your blood work is perfect and normal
not showing lupus or scleroderma!!
It was my PCP, she sent me back to for the skin rashes and fever and bright red swolen hands
and THIS IS WHAT HE TOLD ME!! My PCP said Diane they teach us in medical school
that some one with one autoammuine will usely have a nother one at some time becuse they will overlap each other there fore makeing it hard to diagnose whitch is witch!
Also he told me they also teach us in medical school that paitents with lupus, scleroderma, etc,
will 50 PERCENT OF THE TIME WILL HAVE THERE BLOOD WORK COME BACK NORMAL FOR
THAT AUTOAMMUINE DISEASE FOR YEARS!! That's when if the paitent has all the physical symptoms you have to go with that, becuse not all the time it will show in the blood work.
Rember when i told you all my rumatologist freaked out at my high white blood
counts and jerked me off the pred and imuran and girl i am STILL payin for that
with the worsest flair EVER! And rummy said you need to go to your pcp if your not felling better in 3 days! And i did and bless God, it only took my PCP 15 minuits to figure it out
and my rummy should of known the affects of the pred, and he was not happy with
her as she had gotten me so sick and sent me to him to figure it out.
Big hug's to you Mari!!!!!!!!!!!!! ~ Diane ~
Hi Diane,

While I am sorry for all you are going through medically I am so glad that they are FINALLY moving you down the right road! This topic is happening on another thread but I really believe that I get better care with my PCP then with all the specialists simply because they stop caring about anything not in their specialty. It is almost impossible to get a complete diagnosis when they do this!

Thanks for the update and we will be waiting for more

~LUVMYFLOWERS~
02-18-2011, 05:08 AM
Hi Marla, And bless your heart!! Sure sound's like you and i have a lot of the same symptoms,
This is what happened to me and how they found out the sjorgrens had went ot my brain,
I was seeing the rumatologist here localy the lady one im seeing now ,but my new one she
sent me to cause she dont know what to do with me in the university diagnosed me and is the one telling her how to treat me. Any way she was treating me and my ballance issues started getting worse, numb leg's running into stuff, drunk a
& dizzy headed, tripping a lot, short term memoty prob, way worser, forgetting what i was doing
stuttering when talking, my mind would just go blank, then my face and arms started going numby feeling, my feet, and theside of my face stayed numn for about 2 weeks , even top of my head felt numb, and funny, I was sitting in church and my whole face went very numb and i started drooling out my mouth and it scared me also my leg's were still numby to.
So hubby took me to the emergency room at hospital the imeditly thought stroke by the symptoms my blood pressure was through the roof, heart rate 156bpm
they did EKG, CAT SCAN of my brain, MRI with dye of my brain and mri without dye, come back in my room with my results and said No sign of stroke, heart was fine But that's when they found the 12 lesions on my brain that the radiologist suggested it look to be MS! In the front lobal part of white matter of my brain, SO they said i needed a neurologist to ck me for MS.
So what im saying is i would of probly still not known that the sjogrens had gone to my brain
if not for it makeing me go so numb all over and the brain issuse and if i had not gone
to the er and got the mir with dye I'd probly still be in limbo with the diagnosis of sjogrens,
lupus ,ryanuads, & scleroderma! So i went through the ringer of test for ms also all negative and im left with Pripheral neuropathy and perment nerve dammage in my legs & feet
from the dammage in my brain that works that part, And when neurologist saw i didnt have ms
he droped me and said Ibelive you have a brain disease either caused by the sjogrens or vasculitis. so from there my local rummy sent my to the university to ny new professor of
rumatalogy and there with Probly a eighteen wheeler full of medical records and test!LOL!
He diagnosed me with CNS Vasculitis caused by sjorgrens going to my brain, and sle lupus,
and ryanuad's and it is very rare for it to do that but it is a complation of it and lupus and it dose happen, And he was also not happy that my other rummys ouve the years had not caught it in time, he ask me Is this rumatologist that sent you to me young!! I said yes!!
And she dosent know what's going on with me cause my blood work is mostly normal
except high ANA, and at time's elevated wbc. and at times elevated inflamation markers.

Sure wishing for you Marla that they get your's figured out! If they will do an MRI, and you have
any of the sjorgrens or lupus gone to your brain IT WILL SHOW UP on the MRI, mine are small
mostly were 3mm in size and few at 4mm lesions, witch all the time neurologist was testing for ms. he kept saying also the radiologist of 25yrs that took my last mri aprox 3 months back said
the lesions were to small and didnt look like MS lesions.
Lot's of love & Hug's to you! And wishing you good luck on your new dr. visit!!!~ Diane ~

Diane,
This is such good news for you!
Your roller coaster ride sounds so much like mine. I also had a neurologist who was just sure that it was MS until the lumbar punch results came back normal - then he dropped me like a hot potato!
I have a lot of the same things that you have - a dx of an overlap of Lupus, Sjogren's, RA, Psoriatic Arthritis, with Raynaud's, AVN, Meniere's (or Autoimmune inner ear disorder), and Spasmodic Dysphonia thrown in for good measure. I've also complained about the muscle pain, balance problems and peripheral neuropathy, but the docs don't want to even address those, since the tests came back as normal. Whenever I suggest CNS Lupus or Sjogren's as the causes of this, they nearly laugh at me. Both the neurologist and my most recent rheumy have told me flat-out that Sjogren's is "only dry eye and dry mouth and is easily treatable".

It is amazing that these specialists haven't got a clue!
I'll be very interested to follow what you find out in the coming couple of months. Keep us informed.
Love and Hugs,
Marla

~LUVMYFLOWERS~
02-18-2011, 05:47 AM
Thank's Terri,
The higher dose of imuran seems to not be doing me as bad as it was at first, I still am getting the nausea with it for several hour's not as bad as it was, But the imuran sure makes me feel worse, was makeing my head feel tight and burn and i think it is waht is makeing me feel so weak also. Ill tell you if my brain disease had not progressed so far I surley wouldent be takeing the imuran & 20mg pred, it just totaly wipes what little energy i have out by noon any way. But i know without it the vasculitis will go rampid as it was doing before the med's to slow it down. And I sure hope to keep what little brain thinking i have left!
Yes it is a burden off my sholders to finaly get my dr appt's in order even though i worry about the brain test my professor of rumatologist wanted before i started the imuran and pred so he would have a starting point of the brain dammage to help him with the diagnosis and treatment plan, But maby he can sort it all out , He seems very knoledgeable with the lupus,sjogrens and other autoammuine diseases and the affects of the complications of them, and
the synptoms to look for , So that is a very good thing.
Hope you new plaquinil is adjusting to your body, and you are doing better with it!
Lot's of love & Hug's to you!!!!!!!!!!!!~ diane ~
Hello Diane,
I hope you've had a better day mate and not to bad with the muran because that as been making you bad.
Oh Diane i am happy they've finally sorted your appointments mate and hopefully things can get moving to help you quicker, as you deserve it with the amount of messing about that's gone on and good of your professor for giving her earache.lol
Diane the lots sounds great news and your appoiments all not to fare away and fingers crossed mate they can finally get to the bottom of it, to put your mind at rest because constant worry wow help for a start off as you know.

Well diane what ever they find out mate, as i've told you before i hope to god it's not the C and MS as that's all you need but i am chuffed your finally getting somewhere and they can stick to it.

Thinking of you dearly mate and hoping today as'nt been to cruel to you.

Loads of love xxxxxxxxxx

Peridot_Gem
02-18-2011, 12:27 PM
Hello Diane,
Oh i am pleased for you mate that the imuran as eased abit with how it was making you bad but i'm more pleased in one way that the Doc's are actually pulling their finger out to help more now before it gets to bad the situation your in.
It's such a shame how it drains your energy and they say rest is a good healer i've noticed lately the more i rest the worse i feel for it but my brains getting really foggie now, this morning the hot water bottle once emptied was nearly throwed in the bin, until my brain quickly reacted.lol
Diane how your explaining your professor really knowing his info on the diseases goes a long way in helping you and that's how that GP was at my Doctor's i saw, if i have to go again i might ask for him, ah it lovely when you can chat with someone who knows the situations of the diseases. I just hope for you now diane action is took quickly and tests before it affects you more and i bet your hubby is pleased in one way now.
Diane i'm not having the nausea so bad now instead it's feeling sick like i actually want to throw up, taking my medications as turned into a nightmare i'm taking them out the wrong slots when i'm actually thinking i've done it right and trying to eat properly is getting a nightmare, i want my food but as soon as i start eating that pain kicks in quicker and dow half hurt. I had to laugh in one way this morning ste said how your going on you'll be having baby foods next.lol

Well as you know i'm always hoping your ok and thinking about you.
Love you dearly diane xxxxxxx