It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 02-03-2010, 03:06 PM   #1
Senior Veteran
(female)
 
Join Date: Jan 2007
Location: upstate,NY
Posts: 729
kdel HB Userkdel HB User
doctor appt. needs some advice please

Hello everyone - Yes it's me again (I have a few recent posts on here) Thanks to all who have helped so far. Now I will be seeing a new doc next week - immunologist. I know I will probobly need to see a rheumotoligist as well but this one is first and from what I understand can also be helpful in Lupus. I spoke to his nurse already and she said he can "pick it up" but would then probobly refer me elsewhere. So my question is - how do you get these doctors to run all the tests? It has been my experience that they don't much like it when you ask for specific testing. I have been dealing with this for years now but my symptoms are getting worse and I am so tired of having to explain everything over and over again. I will jot down some notes but also my experience that they don't much care for that either - I had one doctor who wouldn't even unfold it - just stuck it in my chart and when I asked her if she was gonna look at it she said "no, I'll just hold onto it for now" - This was a neuro and I never went back to her again. I have fibro also and the reactions I have gotten from some doctors when I tell some of them about it and the meds I take is very upsetting. I have had the eyerollong, the complete dismissal of everything I say, even had one doc stare out the window while I was talking until I asked her if I was boring her (this was the same neuro) I really don't want to waste my time so any suggestions?

 
Sponsors Lightbulb
   
Old 02-03-2010, 03:29 PM   #2
Senior Member
(female)
 
Join Date: Jun 2009
Location: Brielle, NJ
Posts: 221
heidiclouser HB User
Re: doctor appt. needs some advice please

I'm not sure why you are referred to an immunologist. A rheumy is generally the one who diagnoses and treats lupus. A good doctor should welcome your list. My doc expects that I will bring one with me. I also take news articles and things I find on the web to discuss with him. He appreciates that I know more about my body than he does. He'll ask me how I feel about various treatments. Trust with the doctor is key..staring out the window doesn't invoke trust. I'd keep looking for a doctor who will work with you.

 
Old 02-03-2010, 03:59 PM   #3
Senior Veteran
(female)
 
Join Date: Jan 2007
Location: upstate,NY
Posts: 729
kdel HB Userkdel HB User
Re: doctor appt. needs some advice please

The reason for the immunologist is because even though I have some abnormal blood test results/symptoms pointing toward Lupus I also have an extremely high igm serum - it is 962 when it should be between 48 and 271.
Other results (older) are
anti-nuclear AB - positive
anti nuclear AB titer - high
ANA pattern - speckled
My doctor just seems to want this checked out first since it is so high and he said an immunologist would know what this means and to go from there.

 
Old 02-04-2010, 10:48 AM   #4
Senior Veteran
(female)
 
Join Date: Nov 2004
Location: UK
Posts: 1,567
goldenwings HB User
Smile Re: doctor appt. needs some advice please

Hiya kdel,

it seems as though you are going through the usual steps for eradication of the 'obvious' things that might be wrong with you at this time and in the past and then if that doesn't show up what is wrong, I would have thought perhaps you would then hopefully be referred to a rheumatologist or a lupus doctor who hopefully will do all manner of tests on you if they think it necessary. If you don't meet the criteria, hard as it may feel for you, then they will not make arrangements for testing that they feel is unnecessary. As you know it is not only physical testing they do to diagnose lupus, but they go into your past history and so on. All this then enables them to work out what they need to do, if anything.

With lists, I find that if you make the doctor aware that you have one and need to refer to it because you sometimes forget things, they seem to be ok with it. Also the key is not to 'tell' them what you think is wrong, ask them what they think of A, B or C. Don't take this wrong, but if the list is too "off pat" as they say, then some doctors get a bit annoyed that you might have looked things up or discussed things with other patients and added things to your list. You can understand that from their perspective but if you give only your symptoms and fears then they should at least be courteous enough to acknowledge the effort you have taken in writing everything down that pertains to you.

Then you might ask them to hold onto the list and tell them you have a retained a dated copy of it too. Then you know that is should be on your files but if not you have a hard copy in your possession.

Treatment from any source takes trust from the patient. I think once certain things have been looked into and perhaps discounted then you are put on the right track say for a rheumy/lupus doctor, you will be able to relax and discuss things and hopefully get some peace of mind in doing so, knowing that someone knows what you are trying to get over to them.

Hope this is helpful to you. Take care.

goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 02-04-2010 at 10:49 AM.

 
Old 02-06-2010, 05:18 AM   #5
Senior Veteran
(female)
 
Join Date: Jan 2007
Location: upstate,NY
Posts: 729
kdel HB Userkdel HB User
Re: doctor appt. needs some advice please

Hello again and thanks for the replies and advice. I think some of the problems with my lists may be that they are too long and all over the place!

goldenwings - I get what you're saying about doctors thinking you looked stuff up and then put it on your list and yes I can see how that would annoy a doctor and in the past I may have used some medical terms to describe my symptoms but have since stopped that because you are correct - they do tend to then dismiss that (or those) symptoms when really I just thought it was easier to use the term rather than try to explain what I was actually feeling. I won't make that mistake again! I do meet quite a bit of the criteria for Lupus. I get horrible rashes from the sun, my joints can get get incredibly painful and swell - I hurt all over (but have fibro also - don't know if this is confusing things?) I'm having a terrible time now in the past year or so with flourescent lighting - like in the supermarket. If I am in there more than a few min. I will suddenly get very dizzy, disorriented, start to sweat and then arms and legs get so weak and I feel like I'm going to pass out. I did not know that it could be the lights until I came here. When I get these rashes from the sun I also feel very sick so it is not just "skin deep". One of the problems is that no doctor has ever seen me like this so it is just me trying to explain it all. I have had my entire body swell from the sun - (this was the worst!) I was however away in the Dominican republic and did not seek medical attention even though I was also feeling quite sick. I was concerned about whatever treatment they might do so just suffered through - vacation was ruined of course but now after reading up on things it seems I may have been very lucky to have things get better on their own! Ok well, I am rambling now so I will say goodbye for now - check back later.

 
Old 02-06-2010, 09:59 AM   #6
Senior Veteran
(female)
 
Join Date: Nov 2004
Location: UK
Posts: 1,567
goldenwings HB User
Smile Re: doctor appt. needs some advice please

Hi kedl,

The problem with fluorescent lights affects lots of people with lupus and also without lupus.

It's difficult to do much about if it is in stores and so on, where you can't ask them to have their lighting changed, but luckily there are things you can do at home or when purchasing new lighting. I came across this excerpt from a seminar attended by a Dr. Werth who is chief of the Division of Dermatology, at the Philadelphia Veterans Administration Hospital. She is also a Professor of Dermatology and Medicine at the University of Pennsylvania School of Medicine.

Dr. Werth speaking:-

I have been asked to make a few comments about fluorescent lights. UV rays are emitted by full spectrum and fluorescent lights, as well as most compact fluorescent light bulbs. The amount of ultraviolet light emitted from fluorescent lights is about the same as with incandescent lights. There are a few compact fluorescent lamps that have less ultraviolet emission - here Dr. Werth names a couple of Companies, which I have omitted from this - but suggests using Daylight Energy saving bulbs. There is enough emission from many bulbs to cause problems in photosensitive patients, so filters and tube covers should be used for most lights, as well as lamp shades when possible.

As I said it is difficult to do to approach large organisations to change things. The only other thing to do is identify which stores and so on have this kind of lighting and avoid them. Try to make your reasons for not using the stores known to the Head Office of these organisations if you can and they might, just might, do something if they can. I lert two companies know where I live and they did indeed take it on board. They out some type of filter on the lighting and it improved things greatly.

If you are sensitive to the sun, even sunlight filtering through clouds can cause you to feel very unwell. This is why it is always advised to avoid the sun. If you definitely have to go out in it, wear loose fitting cotton clothing, long skirts or trousers and always wear a hat. Sunglasses too if you can. Always apply sunblock, you can get them with excellent moisturising properties and they are not gooey to use. Avoid as much as you can though going out in the sun.

I have no doubt that you know all of this already but I think it helps sometimes to refresh our memories about what and what not is safe when you have lupus. Please take care.

goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 02-06-2010 at 10:03 AM.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Ortho Surgeon Appt. Thursday. What should I ask and say or not say?? Please Help!!!!! skych Chronic Pain 20 02-15-2011 05:15 AM
PM appt. today. Here is the plan! skych Chronic Pain 20 08-08-2008 05:36 PM
My doctor visit ms_west Chronic Pain 30 08-07-2008 04:59 PM
Need Doctor Advice May76 General Health 1 03-06-2008 06:14 AM
Yesterday's Doctor Appt. Beekermlady Foot & Ankle Problems 1 07-05-2006 06:39 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



VeeJ (172), ladybud (43), AngelicBrat (16), luca689 (7), ksp (6), neveragain444 (6), luvinmusiq (5), Daisygrace (4), brooklyngirl (4), paperbgprinces (3)

Site Wide Totals

teteri66 (1164), MSJayhawk (997), Apollo123 (896), Titchou (832), janewhite1 (823), Gabriel (757), ladybud (745), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 06:26 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!