no rheumatologist

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tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 7/1/2011 7:20 AM (GMT -6)   
Would my GP or neurologist be able to diagnose my autoimmune disorder or do I have to get that diagnosis from a rheumatologist?
 
My insurance is medicaid, and there isn't any rheumatologists locally that will take this, except one, and this doctor only saw me twice and said I did not need to come back. I'm starting to think the reason this doctor was so rude toward me was due to my insurance. Would a doctor do that?
 
Isn't a rheumatologist supposed to specialize in fibromyalgia also? This doctor didn't believe fibromyalgia was a real disease, said I didn't have the tender points for it, but decided to blame my problems on that anyways. Says no medication would help me. That my symptoms were too vague to mean anything. Says low WBC & RBC counts only occur occassionally with autoimmune disease but she could not take my low WBC counts into consideration because they only occurred occassionally, I mean what the hell?
 
I decided to sun a little. I took pictures of a sun rash I developed. I might also hit the tanning beds so I can show them I get a malar rash.
I only have my ANA/antibodies, and symptoms to back up this diagnosis. I don't know how else to prove it other than to show them what happens when I am exposed to sunlight or ultraviolet light..
 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/1/2011 3:19 PM (GMT -6)   
I took a video with my phone and showed him my rash and swollen ankles. It helped convince my rheumy about my symptoms.

My mom is on medicaid and she has had doctors give her the "bum's rush" when she goes to see them. She just stands her ground and insists they treat her. Doctors who accept medicaid have to agree to a reduced rate for the patient when treating them. Some doctors (it's sad to say) feel people with medicaid are not worth the time to see.
Joy

tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 7/1/2011 3:35 PM (GMT -6)   
Well my antibodies correlate with my disease activity, well getting sick, it goes up, and getting better on treatment, it lowers.
 
I will have to drive a long ways to see a rheumatologist, and rent a car to do so, and if I end up going back to one, especially with that kind of distance, I want to know I'm not going to be blown off. I'm already on plaquenil and it's helping, my GP gives me that.
 
I did start the tanning beds today, 8 minutes burned me pretty bad. I hope I won't have to do this for long for that rash to show itself.
 
 

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 7/1/2011 5:28 PM (GMT -6)   
Malar rash is not caused by sunburn. You will get sunburn and sun poisoning, but that has no relation to lupus or to a malar rash. I worry that you are harming yourself, and harming yourself *needlessly*, by putting yourself into a tanning bed.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 7/2/2011 7:50 AM (GMT -6)   
Hi! T,
So sorry about your md/medicaid troubles, I wish there wasn't such a stigma to medicaid and wish the system didn't penalize drs. with such poor reimbursement rates. You really can't blame the drs. Your GP or neurologist can certainly diagnose and order any tests nec. for any condition. I think it's not that drs. think pts on medicaid aren't worth seeing, it's that in great part, the federal government makes the paperwork process so foolish, and lengthy, and complicated, with so many hoops for the drs. to jump through, that it takes longer to TRY and get reimbursed $$ by medicaid, than it does to give care to the patient, and that the other part, unfortunately, is that too many people on public assistance try to cheat the system or abuse it. One of the classic examples that comes to mind is a mother who called an ambulance at 2am to bring her little boy to the ED on a Friday night because he had had a sore throat all week and she didn't have a ride to a dr. appt. or money for medicine. The amulance driver waited out of the goodness of his heart to drive them  home himself, and we sent her home with all the medicine she needed for her son. Either way the taxpayers paid the bill, at least this child got the medicine and care he needed. If you called your nearest hospital and asked to speak to a staff social worker, perhaps he/she could name some drs. who accept medicaid and have a reputation for good care regardless how their bill is paid. Your neuro should know some rheumatologists, too. Could you get yourself to a lupus support group meeting? I think they are posted on the LFA website, and perhaps network for a rheumy that way? Or meet someone who might be able to help you out with a ride? Good luck,
hugs,
suetoo
ps I agree, tanning beds are dangerous but taking pictures for evidence is a very good idea

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night. Advair, Albuterol and DuoNeb inhalers.

tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 7/11/2011 7:40 AM (GMT -6)   
I didn't see any extreme reactions, my face (cheeks and nose) took a red glow, I had bumbs down both arms, some weird sores in a couple of places, and it made me feel run down every time I used a tanning bed, later in the day it wore off, but I quit. They can either believe me that I am sick, or whatever.
 
Thanks Lynnwood, I apprieciate knowing that, but the information on the web states that a malar rash often appears or gets worse after sun exposure (photosensitivity) & that it is caused by a malfunctioning immune system.
 
There isn't any rheumatologists around here to take my insurance, I already know who all the rheumy's are. I don't even know how I'd get one to believe me anyways. The only thing I can really prove is that my antibodies correlate with my disease activity. My test results show this has happened several times. That should be enough proof especially considering my symptoms I have.
 
I don't know how to do this. I am so tired of having tests done and then they don't show what is wrong. This disease is bull crap, if you don't get a severe case of it, your screwed with getting a diagnosis. I'm tired of arguing about it. I'm tired of everything. It's doing nothing but stressing me out and making me upset. 14 years of being dog sick and not once have I had a definate diagnosis of this disease. I get diagnosed with Lupus and then my GP takes the diagnosis away from me. No treatment, no follow up testing on my blood for this, and I never get better. Well I am finally functioning better, and it's because I am taking plaquenil. Is that going to make didly squat of a difference? Probably not.
 
They want to run a bunch of tests on me to see why my nerves are acting up, and if they do this, and then come back and tell me all those tests turn out okay, I am going to get upset. I feel this problem constantly, stupid pain and weird sensations, how am I supposed to handle it if they say they can't find the cause? It's going to really piss me off and get me upset. I'm just sick of the lack of answers. I'm kind of upset that they are running the tests, for I really don't care what those stupid tests say, I know the problem is there. But I can see them coming back at me and saying my tests turn out okay.
 
 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/11/2011 10:43 AM (GMT -6)   
Personally I like plaquenil. I feel better than I did before taking it. Yes, I still get odd sensations and random pains, but it's not constant like before. I've been on it for 4 1/2 weeks and am beginning to feel better every day. The doctor told me it takes 2-4 months before I feel the full effect.

Tfofd, I know you're in "full frustration mode" over the run around you're experiencing, but hang in there. These new tests may just have the answers you're looking for.

I went through three years of testing and four doctors before they figure out my constant coughing was from acid reflux. I know the frustration mode.
Joy

tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 7/11/2011 6:13 PM (GMT -6)   
Plaquenil is amazing, I know. I heard it can take up to a year or two to completely feel like your not sick, I am much better, but I can still tell I'm sick right now. Definetly don't give up on the medication if you get to the point you feel like it isn't doing it's job, because it can still change. I've been sick on it twice, but I gave it a chance this last time, and finally did improve.

Thanks for understanding.
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