Internet doctors ..The Struggle

So today I seen my new rhumy for the second time to do a physical … And I spent an hour talking with him. To sum our convo up in a nutshell he basically was telling me doctors are still researching lupus and fibro (which I already know) and that treatment is difficult … Like I literally have the worst TMJ and fibro pain I ever had and it just sucks when you seek professional help and they don’t even have a clue… So now I am becoming an internet doctor … I’m getting more help and answers from my personal research then from the doctor… It sucks and I feel bad for others who are going through much worse… I have no serious organ involvement at this time… Just some inflammation in my liver and some high blood pressure and heart rate… It’s a really sad and tough situation and I’m trying to stay positive but the pain in my face is overwhelming

I hear ya loud & clear. Every time I visit my Rheumy, I feel like she has no clue. Ive also learned more on the internet than she ever told me. It stinks

I'm sorry you have to go through this & hope you get some relief soon. (((HUGS)))

OMG, I'm in the same boat. Earlier this month I saw a Rhumy. We spent about an hour going over symptoms and test results my PCP ordered because the PCP thought I possibly have lupus. The rhumy said that just because some of the test showed positive, there could be something else going on. So he gave me a steroid shot to see if that helped any of my symptoms. As well as do more blood work and chest Xray. The shot made me feel horrible for the next two days, but then after that I felt pretty good for the following 4 days. Then my pain started up again. The following week my Xray came back neg according to the rhumy and my tests were still inconclusive. He said that he thought that something is going on but he could not tell me what. He also said he thought I was depressed and that he could not tell me I have Lupus as I still don't have all of the symptoms and my blood work does not show it. He wanted me to do more blood work in a month and come back to see him. I'm just at a loss.

I'm so sorry your going through this. It took me a long time to be diagnosed and I been dealing with Lupus since I was a child. 2 Rhumys and my primary doc finally all agree I have Lupus and fibromyalgia. I find that learning about as much symptoms as possible and just making your self knowledgeable helps allot at your apt. cause you can better explain to your doc what your feeling...but my new Rhumy basically tried to explain nicely that they are still learning about the disease and there is no 1 treatment that works for all lupus patients. They go to conventions to talk about these things. Its just sad that there isn't more break throughs and that we kinda have to be our own docs. Record everything, I mean EVERY odd feeling, symptom because sometimes we focus on the worst ones and over look other things like color changes in hands, skin spots on parts of our body that's hard to see. How many days between really bad flare ups. My second Rhumy laughed and said usually people walk in like me saying hey I have lupus, but it turns out they don't, but me I definitely wasn't lying lol.
Minxie40 said:

OMG, I'm in the same boat. Earlier this month I saw a Rhumy. We spent about an hour going over symptoms and test results my PCP ordered because the PCP thought I possibly have lupus. The rhumy said that just because some of the test showed positive, there could be something else going on. So he gave me a steroid shot to see if that helped any of my symptoms. As well as do more blood work and chest Xray. The shot made me feel horrible for the next two days, but then after that I felt pretty good for the following 4 days. Then my pain started up again. The following week my Xray came back neg according to the rhumy and my tests were still inconclusive. He said that he thought that something is going on but he could not tell me what. He also said he thought I was depressed and that he could not tell me I have Lupus as I still don't have all of the symptoms and my blood work does not show it. He wanted me to do more blood work in a month and come back to see him. I'm just at a loss.

Minxie and Crystal, I most definitely hear you both! I had to bypass my regular doc because he was dismissing my pain and exhaustion, despite them getting worse and worse. I went to a very good rheumy, telling him that fear of Lupus is what brought me to him. He didn't poo-poo me, but he did warn me that there were many, many things it could be instead. He knew his stuff (I already had done so much research myself, as well as having hand-picked him via net researching), and wanted to take care of my pain first and foremost. (We're still working on that, lol.) He wasn't the sort that required all four symptoms from the list to diagnose Lupus... he made it clear that if there is enough evidence to HIS mind, he won't hesitate to declare it AND defend that diagnosis, even in court if necessary. It was very reassuring.

It has taken ten months, but as he's gotten to know my symptoms, and as new ones appeared, he was finally able to declare (within reasonable doubt... he prefers to cover himself in case something crops up to change his mind) that it is indeed Lupus. I'm ANA negative, so no helpful bloodwork here either. Sometimes it just takes time and patience to get the diagnosis.

And I very much agree. It's terrible how little doctors know and understand about auto-immune diseases (not just Lupus)! This is why it's so important for us to be our own advocates... why it's vital we do our own research and keep an eye on ourselves. Perhaps one day they'll crack the code, but until then, we have to work with/beside our docs for our own benefit.

But oh, I am so sorry the both of you are having to go through this struggle! ::hugs to both:: Oh, and Flutter too! ::extra hug::

Hi Crystal and Lupus Friends!

I know how horribly frustrating this disease is! Both the diagnosis and treatment. I am so fortunate to live in Southern California, given that my Rheumy and his partner are here and work out of Cedars Sinai and UCLA. My Rheumy is Dr. Swamy Venuturapalli and his partner is world renowned Dr. Daniel Wallace! Dr. Wallace has wrote everything and anything, including all major treatment algorithms fir most autoimmune/Rheumatic disorders. Dr. Swamy is amazing because he utilizes both a medical and holistic approach. They work closely together and are so well respected in this field that I was intimidated to go see them, as I felt there was no way they could live up to the hype that I had researched. I had been going to a local Rhuemy (diagnosed last year, with symptoms for past 4-5 yrs) and he was horrible!! I have SLE (hight positive ANA) and he kept saying I had discoid Lupus bc my skin rashes are very pronounced!!I have many overlapping disorders as many of you do, but he was focused on each symptom instead of remission. Now the I’m going to Dr. Swamy my world is starting to change. We focus on remission as a goal and no stoned is left unturned. I have many serious symptoms with my vasculature and BP, but he’s on it! I’m not in remission (or even close yet) but I DO trust that in his care I will be! The greatest advise I can give is find someone who really knows this specialty and has trained with the best! If you can’t find them, it’s worth it (if at all feasible) to come see these Rhuemys! Their staff is amazing and beyond helpful!! You will get in and you will feel like you have finally arrived at the beginning of the yellow brick road! A great MD, with powerful knowledge and belief is how my journey had REALLY begun! Before that was forgotten history. I feel safe and cared for. Feelings that so few overcome and I never thought I would say, let alone feel! Please take care of yourselves!! I feel horrible almost everyday, but with the care and diligence of my MD and his staff, I know someday will come where I just get out of bed, at 7:00am, and decide to go for a long run…ok jog…baby steps:) OllieVy



OllieVy said:
Hi Crystal and Lupus Friends!

I know how horribly frustrating this disease is! Both the diagnosis and treatment. I am so fortunate to live in Southern California, given that my Rheumy and his partner are here and work out of Cedars Sinai and UCLA. My Rheumy is Dr. Swamy Venuturapalli and his partner is world renowned Dr. Daniel Wallace! Dr. Wallace has wrote everything and anything, including all major treatment algorithms fir most autoimmune/Rheumatic disorders. Dr. Swamy is amazing because he utilizes both a medical and holistic approach. They work closely together and are so well respected in this field that I was intimidated to go see them, as I felt there was no way they could live up to the hype that I had researched. I had been going to a local Rhuemy (diagnosed last year, with symptoms for past 4-5 yrs) and he was horrible!! I have SLE (hight positive ANA) and he kept saying I had discoid Lupus bc my skin rashes are very pronounced!!I have many overlapping disorders as many of you do, but he was focused on each symptom instead of remission. Now the I'm going to Dr. Swamy my world is starting to change. We focus on remission as a goal and no stoned is left unturned. I have many serious symptoms with my vasculature and BP, but he's on it! I'm not in remission (or even close yet) but I DO trust that in his care I will be! The greatest advise I can give is find someone who really knows this specialty and has trained with the best! If you can't find them, it's worth it (if at all feasible) to come see these Rhuemys! Their staff is amazing and beyond helpful!! You will get in and you will feel like you have finally arrived at the beginning of the yellow brick road! A great MD, with powerful knowledge and belief is how my journey had REALLY begun! Before that was forgotten history. I feel safe and cared for. Feelings that so few overcome and I never thought I would say, let alone feel! Please take care of yourselves!! I feel horrible almost everyday, but with the care and diligence of my MD and his staff, I know someday will come where I just get out of bed, at 7:00am, and decide to go for a long run...ok jog...baby steps:) OllieVy

That’s wonderful that you have found such knowledgeable doctors. Can I ask what meds they have put you on? What kind of care you are receiving?