I'm fed up sick of being passed back and forth now

[sue90x]

hi everyone,
I saw neurologist yesterday, he took on himself my last visit Oct '05 to rediagnose me!- 21 years following my initial diagnosis! style_emoticons/<#EMO_DIR#>/blink.gif

This mind blowing re-diagnosis made on the basis of one single blood test! so the millions done over 21 years suddenly counted for nothing! I was and still am in a whirlwind

my consultant since my dx sadly retired last year style_emoticons/<#EMO_DIR#>/crying.gif my neuro told me NOT to attend my old consultants clinic- for my final appt thankfully I didn't listen! The retired consultants clinic - renal clinic, his registrar refferred me to rheumy clinic (hadn't been to rheummy since initial investigations pre dx, my symptoms have generally been kidney related)

at that appt I was dx back to where I was before! style_emoticons/<#EMO_DIR#>/ermm.gif As I've been having more seizures than usual and other neuro manefests ie: going numb from neck down so rheummy
obviously wanted me to see neuro - still with me?! style_emoticons/<#EMO_DIR#>/unsure.gif

I saw the offending neuro yesterday and took along a highly qualified physio-my old physio, who's hubby has MS strangely enough neuro was remarkably calm and oh so polite but worst of all he said he never said I don't have SLE!, hes done nothing to allay my fears with my neuro changes hes simply sent me back to rheummy! style_emoticons/<#EMO_DIR#>/umm.gif

I'm sick to the back teeth of being a pawn on hospital chess table! I go to see a highly qualified highly paid specialist with symptoms relevant to my illnesses and get nothing other than I'll send you to someone else!


I go to all my appointments armed with my symptoms printed from my comp, I always turn up for appointments I've even got one deluded Prof that wants me back to work- bless! he must be qualified in something?! style_emoticons/<#EMO_DIR#>/wacko.gif

anyone else have same carry on? my old renal consultant always told me I am an enigma (I just took that as standard SLE)!, he frequently told me I'm a walking miracle because of my medical history he'd witnessed- I miss him so much this hospital ship is so scarey without him at the helm!

how come he always seemed to know what to do? he was very protective of me and kept my notes in his office with his sec rather than being in the records dept just so he would know where and who wanted to see me and why as they'd need to request permission for my notes,

I feel like I'm in the desert or the depths of the ocean, and there are lifeboats but they're ignoring me!

anyone had same carry-on with nasty neuro's?
thank-you for reading.

Suex
I refuse to smile until one of these crazy doc's listens!!
take care all style_emoticons/<#EMO_DIR#>/foryou.gif style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/foryou.gif style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/foryou.gif style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/foryou.gif

[Lily]

((((((((((((Sue))))))))))

I've tried to paragraph your post to help me understand it a bit better (my problem - brain scrambled today style_emoticons/<#EMO_DIR#>/tongue.gif )

As I understand it your Rheumy sent you to the Neuro to get an assessment on your ongoing neuro probs? Your Rheumy believes you have SLE & APS?

Correct me if I'm not understanding this properly?

If so then I would ditch the Neuro in favour of another one who knows more about SLE and its associated neuro problems - not all do. Preferably one suggested by your Rheumy if he thinks its necessary. The other alternative is that your Rheumy treats you anyway. They often send us out to get a headsup on a particular problem and get some feedback from the Neuro. It doesnt mean they always take note of what the Neuro says, especially if they have their own ideas about what is wrong. And the Rheumy is in a better position to oversee our treatment.

Whats important is that the Rheumy is doing enough to keep your disease under control. I see a Neuro but he thankfully did his bit, diagnosed the CNS Vasculitis and then referred me back to the one who oversees everything for treatment. Ideally that's how it usually works and how it works best. Have one person overseeing it all (preferably your Rheumy or in my case the Immunologist who specialises in AI diseases and treatment). Let them be the one who gathers all the info they need from other specialists so that they can tie it all together and form a treatment plan.

What meds are you currently taking Sue?

Sending hugs, finding a good Neuro is like searching for a needle in a hay stack at times, but they are out there, its just that some specialise in certain areas more than others. Some have more experience with Lupus than others. And some have a God complex too.

style_emoticons/<#EMO_DIR#>/hugbetter.gif

love
Lily

[sue90x]

my brains always scrambled too it's supposedly brain fog? it feels heavier than any fog to me! I can't see its a real pea souper!

my meds Lily - low molecular eight heparin-( according to rheummy's senior reg will supposedly going to melt me from the inside out!)

rampipril- anti-hypertensive
losartan- antihypertensive

bendro- diuretic anti hypertensive
amlodopine-anti hypertensive

ketoprofen NSAID- since I was 18 for juvenile arthritis!
lamotrogine- anti-convulsant(temporal lobe epilepsy)

moclobemide- anti depressant
Ranitidine to protect my gastic lining

senna and fybogel to keep the 'system' chugging along!
dihydrocodeine and paracetamol pain relief- very limited area because of hypertensives and epilepsy.

My rheummy summized that I've probably had SLE all my life as my mother had rheumatic fever when she was pregnant with me, it was most likely 'woken' via major bone trauma when I was 6yrs old, I had every

infection going at school had symptoms twice as long as everyone else's. was generally ill all my life, I recall crying a lot of the time saying I just hurt everyhere, I was classed as to be a dramatic child , with

nothing to be seen other than when a 'real' infection /bug came along.
I had tonillitis basically right through my teens, they were disgusting it was late 70's and docs were

suddenly very reluctant to remove the terrible things.
Finally after years of a stinking pus filled mouth they were removed at 19yrs old in , by which time things

had really gone crazy regarding SLE, I was finally diagnosed as having SLE post CVA,'84 I was with renal dept for next 21 yrs

IN '88 I had my only successful pregnancy with IV hep 35 plasma pheresis via femoral central line and max dose prednisilone, my baby delivered by elective section at 31 wks was the second in the country born using

these then' new experimental' aggressive measures, St Thomas's beat my obstetric dept by two weeks I didn't know we were in a race! (hope you get the gist).

I had a stillbirth in '94 trying a different(supposedly already successful many times over method) was rediagnosed as also having APS plus many overlap a late miscarriage in '96 by yet another method! I

developed an infection via the subclavian central line which caused endocarditis, then came encephelitis then vasculitis (I developed an allergy to penecillin causing steven-johnsons, bacterial meningitis I had docs

from all over the country(truly) coming to gawp at me I was in semi councious stupor I was photogrphed for text books (I'd love to see them!) finale' had a right side TIA I was in ICU my hubby and daughter were told

to say their goodbyes. I recovered against massive odds all along under same consultant's care since '84 last year he retired. then my neuro (since 96) said hed take on my case, he rediagnosed(after retired

consultant had left) co on basis of one blood test as having nothing wrong other than a clotting disorder not even APS,I am sure during last 12 months I've had a nervous breakdown.(I already see psychatrist for the

depression as I've often felt suicidal
I'm now under rheummy care(Prof Emery) his senior reg said I was a time bomb ticking could 'go' at any

time (March '06). everyday like all of this board is different, I can't plan anything must be a nightmare to be around on family holiday's I rest rest and rest somemore! (not that I do anything much anyway). leading up

to all hosp appts. I'm now being hounded to get back to work,(my GP is on my side and says its like some kind of sick joke by docs that don't understand lifelong illness)) CNS symptoms are becoming more

prevelant, confusion frequent temp paralysis, numbness hands and feet, truly crazy raynauds and a nutter of a neuro that I was sent to see because of this and the idiot has simply sent me back to rheuumy dept! my

legs keep giving way thank the lord its only been at home so far. I admit l and think everyone on here is perhaps guilty of same, I'm far too independant and insist on doing things for myself- I see it that it'll come

soon enough that I simply won't be able any longer because I know that things are definately progressing via CNS involvement. so sorry for the life story Lily, bet you wish you hadn't asked darlin'it just seems the

only way instead of bits and bats here and there.
many thanks for reading
take care all
Suex style_emoticons/<#EMO_DIR#>/foryou.gif style_emoticons/<#EMO_DIR#>/Thanx.gif

PS rheummy says theres absolutely NO DOUBT'S I DO HAVE SLE and cannot understand why neuro said I don't (I'm at the mercy of a teahing hospital trust, can't avoid this rubbish really other than complain or have nervous breakdowns!
Suex

[Sleaps2much]

(((((((((((((((((((((((((((((Sue)))))))))))))))))) )))))))))))

Been there, deposit him somewhere between **** and.... well, **** sounds good to me, get another neuro. Sorry you have to go thru this, I must admit I've gotten lucky with neuro's and only had 2 quacks before that. All I can say is move on and I'm truely sorry, I understand.

Sleaps

[Lily]

((((((((((((((((((((((Sue))))))))))))))))))))) style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/foryou.gif

You are obviously a fighter or you wouldnt be here, I'm sorry for all you have been through but yes like Sleaps I understand. It was only my current doc who took ALL things into consideration and decided to run the show that saved my life. And lucky for me I pushed on and persisted or I wouldnt be around to tell the story either. Sleaps has a similar scenario too.

I'm also of the opinion that you need to dump this idiot neuro and move on. He is holding up your treatment and personally he sounds like he's got his head so far up his backside he hasnt seen daylight for decades style_emoticons/<#EMO_DIR#>/hissy1.gif style_emoticons/<#EMO_DIR#>/hissy1.gif style_emoticons/<#EMO_DIR#>/hissy1.gif Has he no knowledge of our diseases at all, doesnt he realise that with the right meds you could do a lot better!

I'm thinking that you discuss all this with your current Rheumy and also ask that you be put on some kind of disease altering measures for your disease. There's no need to live like this and I am totally not understanding why they dont have you on any immune altering meds. Its obvious that they would probably benefit you and are certainly worth trying. Plaquenil for starters and then if need be add something like Imuran, I bet that they would both benefit you and help your overall situation greatly. Has anyone discussed these with you, have you ever been tried on similar drugs?

Sending hugs and hang in there, and know that you have a lot of people nodding their heads and saying yes been there, done that it didnt work so now its time to get the help I deserve. With the support you receive here its achievable and yes you owe it to yourself to seek better help.

love
Lily

[lisade]

Hi Sue, I am sorry you are having such a difficult time right now.
I have to agree with everything Lily said. My rheumy sent me to a neuro for a consultation to get a second opinion that my neuro symptoms were caused by the lupus. The neuro confirmed that and sent me back to the rheumy to oversee my treatment.
I still see the neuro periodically, but my rheumy manages my disease, if my neuro feels I need soemthing different he contacts my rheumy and discusses it with him. That way everyone onboard knows what's going on.

Good luck