[GSD77]

:lol::worried:

Hello. My name is Laurie. In 1997 I had a digital diagnosis of lupus underlining scleraderma.I saw a rhuematoogist for 4 years.He gave up on me and told me to go home ,take tylenol,and meditate.I saw another dr in Indiana and he dx lupus,fibromyalgia,and raynoud'
s.I moved back to Colorado and am currently seeing a md, He basically is a pain management dr. but is lowering doses untill I'm off the pain meds. He refuses to give me referals for anything including an mri for a blood clot on my brain.I'm in a catch 22 situation because I can't find another pain management dr. here.Also he won't look at previous records.I would like some suggestions on how to start over to get dx and treatment.I can't live a normal life as i'm sick all the time. Can someone please help me.Any input would be greatly appreciated. Thank-you ! Laurie >GSD77

 

[heavens_child0101]

I'm confused. You are seeking a new diagnosis every time you move? That doesn't make any sense. You've been diagnosed with lupus, you don't need to get a diagnosis again every time you see a new doctor. Any doctor who refuses to look at your previous records is not a real doctor and I would recommend finding someone else. Hope you get this all worked out.

 

[halfpintfl]

Hi Laura, I think I know what you mean, you are getting a different dx with every dr.
that you see, so how can you really know what is going on. I don't know what your symptoms are, but they seem to have led one dr. to dx Lupus. I suggest that you get all you'r symptoms and health history written down, make a copy for you to keep,and the other tell the dx to put in your file. I would suggest that you make an appt. with a Rheumatologist,as he is the only one that can help you. You will probably have to wait a month or more, but that's normal. Let us know how it turns out. Be well.

 

[onetay]

Hi Laurie,
I must say it is disturbing to hear that a rhermy gave on anyone. What is tylenol and meditating going to do for you? You don't want the answer to a math test lol.

Ok now I am done making fun of your doctor. Is there anyway to call your doctor in indiana and ask them if they have any advise for a good doctor in Colorado? If so don't waiste time just call Monday morning and ask for it. As for taking you off pain meds done thing that is a good idea that the moment if you have nothing else to help you but tylenol and meditation. Maybe what you need is a gp for the things a rhermy can't or won't do. Look for the rhermies and also dermies. I know you also have skin problems so maybe the dermy is the way to go for now.
I had a good dermy(since retired of course) but he is the one that found my sle. He had a sense of humor thank goodness. His main goal was to find out why things were happening to me. You need to find someone to watch what is known and find out if anything else is going on with you. I know it is hard Laurie but make a list of questions you want to know about the doctor and his practices. Also while in waiting room take with other patients there and see what they think of the doctor and staff.
I am not sure what to tell you in the mean time but I am hoping that you get relief soon as pain and frustation can be worse than the diseases. If you need anything you know how to get a hold of me and I am here day or night for you.
Tammy

 

[xinxiang37]

Laurie

Go to a neurologist. Call your drs office who dx you and have your records released to the neuro. Blood clot on brain is serious business, I know my husband had one. He can refer you to a good Rhumy. Don't fool around!!

 

[Maia]

I think you need to find a rheumatologist, and an internal medicine doctor. A pain management doctor that won't look at past records isn't a very good one, and if there are no other pain management doctors then you're going to have to go elsewhere and those are the two I'd seek out if I was in your shoes.

What pain medications are you on, and how are they being weaned? Has the doctor made suggestions for alternatives (I am assuming you are being weaned off narcotic pain meds). What symptoms do you have that need management?

If possible, it's a good idea to get/keep the bloodwork and visit notes from past doctors yourself so you can get off to a running start when you need to relocate and/or change doctors. When you can bring a firm dx, backed up with bloodwork hopefully or a visit note from a doctor explaining his/her diagnosis, it really helps the new doctor to move forward quickly by either renewing current meds or coming up with a new treatment plan.

See if you can get those things together for yourself by calling the old doctors/hospitals and then start investigating a little to try to find a good GP/internal medicine doctor and also a rheumatologist. Good luck - hope you find these doctors quickly and they are better doctors!

 

[GSD77]

Thank- you to all!

Thank-you to all who responded to my post of (starting over) You all gave me alot of good advice as to where to start.A couple of you asked my symptoms>severe pain in muscles,joints, and ligaments. Always very tired and its worse when I go out in the sun.I feel like I have the flu all the time.Feeling like a fever but none.My skin burns all the time and I have a rash on my whole body except my face. The rash are small circular shaped and red. Sometimes scaley. They don't itch or hurt just ugly lol . Again thank-you very much for helping me out. I really appreciate it! May God bless you all! Laurie > GSD77

 

[Lily]

Hi Laurie,

Sorry for all you are going through :hug: no-one should have to put up with that. I agree that you need new docs who are much better informed than the ones you saw.

With you having such obvious skin problems after the sun it's definitely worth seeing a Dermatologist who may even biopsy the rash and could give you an answer that way. No matter what the rash is it sounds miserable and at least they could help with that.

sending hugs,
hang in there :yes:

love
Lily