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Re: Questions
Jun 22, 2004
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Thanks Hewie,
I used to go to a nice lady internist. She was pretty thourough but she didn't always really listen to me. She was kind of far and all her referrals were to doctors that worked out of a hospital that I didn't care for. So I changed. I now go to my husbands dr. She's ok but doesn'r really think out of the norm.
What kind of specialist are you going to see?
I went to an immunologist for an immune deficiency that I had been treated for from a hematologist. Turns out that my immune system isn't causing most of my problems. Although a little deficient, it doesn't need therapy. He told me to go back to a neurologist and have my "white spots" and my pituitary double checked. From what I described to him he didn't think that my headaches sounded like migraines and that's what the last neurologist said she thought the spots were.
Argh.....it's so exhausting!
Thanks for listening.
mamu

Mamu..

I am see a autoimmune disease specialist at a renowned teaching clinic here in my state. I've not seen him yet.. I've only investigated him. He is the head of rheumatology there and his area of interests are SLE, MCTD, Sjorgren's. Autoimmunine diseases. So I am still in the same boat as you - waiting and hoping to find WHY I feel so absolutely miserable all the time - have felt that way for years (increasingly). My intial doc thought neurological so sent me to a neurologist who did ALL the tests including, MRI & EEG and complete bloodwork including ANA, and anti-dsdna tests. BLood work came back normal except anemia, and high ANA of 1:640 speckled pattern so he referred me to a rheumatolgist - appt. took 5 months! That rheumy, though very nice and seemed to care, did not specialize in lupus thogh. He ordered repeat bloodwork plus more bloodwork such as Ro, Jo, La, AP, SSA, SSB and maybe more...? can't remember.... All except the ANA again came back normal. This time the ANA had dropped to 1:160 positive so he said "Most your symptoms are neurological and you have numerous white matter brain lesions so you need to go back to the neurologist!" I did... 3 times - had another MRI, EEG, in hospital testing for seizures as my EEG strongly suggested them, spinal tap and again repeat bloodwork with the ANA now !:2560 - next time did tests masthenia gravis, and anti-dsdna and anti-phospholid (AP) again... That's not been that long ago and I've not heard on them so I just don't know. This was at a different institution then where my July 1st appt is. The neuro wanted me to see the same rheumatologist I had seen before who had just shrugged at my symptoms; and I found out later specializes in RA, gout, bursitis (which I do have also!) but not lupus ... I said no thanks... he's really very nice and good in his field but I want to see someone whose speciality is lupus... and I researched via internet and got myself the pending appt. (by the way, they had another rheumy who specialized in lupus at the 1st clinic but the neuro would not give..
Re: Questions
Jun 22, 2004
--------------------------------------------------------------------------------

Thanks Hewie,
I used to go to a nice lady internist. She was pretty thourough but she didn't always really listen to me. She was kind of far and all her referrals were to doctors that worked out of a hospital that I didn't care for. So I changed. I now go to my husbands dr. She's ok but doesn'r really think out of the norm.
What kind of specialist are you going to see?
I went to an immunologist for an immune deficiency that I had been treated for from a hematologist. Turns out that my immune system isn't causing most of my problems. Although a little deficient, it doesn't need therapy. He told me to go back to a neurologist and have my "white spots" and my pituitary double checked. From what I described to him he didn't think that my headaches sounded like migraines and that's what the last neurologist said she thought the spots were.
Argh.....it's so exhausting!
Thanks for listening.
mamu

Mamu..

I am see a autoimmune disease specialist at a renowned teaching clinic here in my state. I've not seen him yet.. I've only investigated him. He is the head of rheumatology there and his area of interests are SLE, MCTD, Sjorgren's. Autoimmunine diseases. So I am still in the same boat as you - waiting and hoping to find WHY I feel so absolutely miserable all the time - have felt that way for years (increasingly). My intial doc thought neurological so sent me to a neurologist who did ALL the tests including, MRI & EEG and complete bloodwork including ANA, and anti-dsdna tests. BLood work came back normal except anemia, and high ANA of 1:640 speckled pattern so he referred me to a rheumatolgist - appt. took 5 months! That rheumy, though very nice and seemed to care, did not specialize in lupus thogh. He ordered repeat bloodwork plus more bloodwork such as Ro, Jo, La, AP, SSA, SSB and maybe more...? can't remember.... All except the ANA again came back normal. This time the ANA had dropped to 1:160 positive so he said "Most your symptoms are neurological and you have numerous white matter brain lesions so you need to go back to the neurologist!" I did... 3 times - had another MRI, EEG, in hospital testing for seizures as my EEG strongly suggested them, spinal tap and again repeat bloodwork with the ANA now !:2560 - next time did tests masthenia gravis, and anti-dsdna and anti-phospholid (AP) again... That's not been that long ago and I've not heard on them so I just don't know. This was at a different institution then where my July 1st appt is and though supposedly this clinic is good.. the one I am going to - 2 hours away - is world renowned.

The neuro wanted me to see the same rheumatologist I had seen before who had just shrugged at my symptoms; and I found out later specializes in RA, gout, bursitis (which I do have also!) but not lupus ... I said no thanks... he's really very nice and good in his field but I want to see someone whose speciality is lupus... and I researched via internet and got myself the pending appt. (by the way, they had another rheumy who specialized in lupus at this 1st clinic but the neuro would not give.. she wanted me to see the same rheumy and as I said... I said no.. waste of my time and his...) I've been diagnosed with hypochromia (advanced anemia) and have constant flank pain now (ebbs & flows at least) which sent me to the ER last month. I do feel at this point, if some help in the way of TREATMENT! for my symptoms is not forthcoming soon...... I may not make it to see any grandchildren.... I just turned 50. I am more & more ill all the time and my creatanine & amylase & platelet counts & lymphocytes, & esonophils, & basophils were found, from blood tests done in ER, to be high. So I researched those too and found that this is all very common in lupus... I do agree with Angelic (from hours of research) that the ANA and other blood tests too! can flucuate and therefore are not the best indicator of disease activity.. What is the best indicator of disease activity is how you feel! isn't it..!?!?!?

It is hard, as you say, to find a doctor who thinks out of the norm. And so many diseases, lupus being one of the foremost, are difficult to make a firm diagnosis on. Your doctor may just be being careful as Angelic said. But I've learned from all this that is is vital for you to take an active role in your own health and that often, in today's busy world, takes pushing a bit more and requesting to see a specialist(s), and not letting one or two or even several doctors just brush you off when you know your own body and you KNOW this is not normal for you. Doctors are people just like us. THey have good days & bad days, off & on days,and are just too busy to focus on just one specific disease or to research it - this is where specialists come in. And even then... in my personal experience... it's hard. THey are often overbooked, overworked, and insurance & other restrictions make it difficult for them to do what they'd maybe really like to. Occasionally someone does find a really good internist or general practioner that works - my best friend has one! Wish I did!... but more often than not... getting docs to take you seriously is just a battle that we all fight these days...

As far as you EVER maybe having lupus... for that doctor to say no is just plain ridiculous! Unless they are God and can see the future - they don't know any more than you do! I have been diagnosed with Fibromyalgia too by the way... And I've just today learned by reading these posts that it doesn't cause the joint pain like lupus! These posts are invaluable for gaining insight!

With that.. this is very long.. I"m sorry... Yes, IT IS SO VERY EXHAUSTING! aggravating - downright depressing at times.. (read some of my other posts & replies here and on the general immune disorder board)! I hate it... Recently I was so......... very depressed. I do think that if not TREATED properly soon.. that I have no hope for any kind of future and I was depressed to the point of suicidal thoughts... I posted on here and got a lot of support.. DO whatever you have to do.. to hang in there and I sincerely hope you can get some answers soon too...=) Maybe your present doc will give you a referral to a good rheumatologist or perhaps there is a large teaching university not too far away that you can request to see a lupus or autoimmune specialist there..? Then, I would recommend you ask the contact people about these doctors, what they specialize in and how long have they worked in this field... I've absolutely refused "newbies" at this point - told them I'm just too ill now to waste any more time... Be amicable and they will be so with you (most the time!).. Maybe your former lady internist can help you in this..??

I don't know... I'm just grasping at straws here.. just giving you ideas from what I've learned in my personal case... :) AND...white matter lesions may not be something many are concerned about but I AM..>! I told the neuro..... it's my brain...!

Take care & keep us posted... we are kinda in the same boat at this point without a diagnosis so.. maybe we can help each other...=) I apologize ahead of time if I don't post for days at a time.. I'm feeling "relatively" well right now... sometimes I'm too ill to even want to talk to anyome... :eek:

Luv from hewie... :angel:





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