Posted 10 October 2008 - 10:38 AM
Posted 10 October 2008 - 11:34 AM
I said it Ced's thread that doctor's won't treat pain, or even acknowledge it, without a relateable cause that THEY can find. In another thread I thought that the hyper diagnostition and PTDAD cause and effect should be recognised.
Why is it that from no other profession except rock star would we tolerate dismissal, arrogance, rudeness and plain stupidity so why do we take it from doctors?
Finally I think that refunds should be given, when doctor's come up with a diagnosis so plain and frankly non medical that we could have made it up ourselves, and yet it actually turns out a real hum dinger of a disease is at play.
Hope the November appt goes well so that you get to keep you patience, dignity and all!
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Posted 10 October 2008 - 11:45 AM
I feel your frustration and have experienced the same with a few doctors I've come into contact with. It doesn't get your blood boiling, but we have to trudge on and find the one that for us. It's like finding a shoe that fits. There's a Dr out there that will "fit" as well. You just have to keep looking for him or her.
Posted 10 October 2008 - 04:29 PM
Posted 10 October 2008 - 04:55 PM
So sorry you are going through the dreads. We hear you. Have you read the post on weird and wacky?? It will boost your endorphins and it may help you get through this. Who knows you may like the sclero doctor!!
Keep you in my thoughts.
Posted 11 October 2008 - 01:38 AM
Posted 11 October 2008 - 04:41 AM
You HAVE RA, Sclero I want to run a few more tests on because your not straight forward case, you had a neg. test four months ago but are showing postive now, lets run another and look at things but since you are having chest pain and shortness of breath lets do a high contrast CT and do an Echo because I hear a significant heart murmur. Lets do some more labs and get a baseline on your X-rays and get you started on Metho. Lets see you in a month. We will get you feeling human again.
ARRRR, I saw the first one Friday and the second one Monday not like a lot had changed in a couple of days!
Posted 11 October 2008 - 07:40 AM
It is truly frustrating when we PAY someone to treat is unfairly. My suggestion is to fire doctors like that, and keep looking till you get one that you can relate to, and treats you like a human.
Posted 11 October 2008 - 10:05 AM
Posted 11 October 2008 - 09:28 PM
I felt I add to add my bit here because I've such a bad time with doctors over the years and to a certain degree --I still do!
My rhuematologist is wonderful and I can say that with hand on heart. But my general practitioner has much to be desired. She's typical of how I was treated on the road to diagnosis many years ago.
You'd think that by now they'd have enough knowledge to treat sclero as a disease and not as a person.
I have my 12 month review, even though I attend every 6 months (6 month checks) This one will involve me being at the hospital all day undergoing all manner of tests. I'm thankful because without this care I would have no one medical to discuss my symptoms with. My general practitioner dismisses any visit I may make, as another symptom of sclero -- therefore not her problem, It's nothing to do with her. Now hold on a minute! -- you are my general practitioner?
I'm put down as a statistic "You are the only patient I have with sclero -- it's rare Y'know"
Now I may be missing the point but wouldn't you think that she'd just be a tad interested seeing as she's hardly going to come across many people like me in her career?
I can assure you she's not and I'm packed off to the hospital with a sore throat! Of course she's not the only one that's treated me like I was a raving hypochondriac! Before I had a diagnosis, my symptoms were caused by myself it would seem. My lifestyle, my nuitrition and a desire to have something wrong with me! I was once discharged from clinic because the doctor told me he'd seen quite enough of my stomach and me, and if I didn't change my way's my problems would become worse.
That was over 15 years ago and my problems did become worse but through no fault of my own. I don't blame the clinic doctor for my disease but I blame him for the lack of confidence he gave me and the complete distrust I had in the medical profession.
I could go on all day about doctors but the upshot is, they're not all bad! I have good, bad and apalling even today, and I've met the same over the years.
I refuse to become a statistic and maybe thats my fault too!
You are not alone?
Posted 12 October 2008 - 05:16 AM
At least for those of you in America you have more of a choice than us in England.
Posted 12 October 2008 - 09:32 AM
My heart goes out to you and everyone who has had a bad experience with doctor(s) and some are even stuck with their current winner. The one doctor that bugged me was dr no. 2 who would greet me with a huge smile and say how are you? That was early on when my health was spiraling downward so fast I felt like I was on a plane going nose down at a high rate of speed. I wanted to say My dearest doctor, I am dying while you are nonchalantly treating my disease like I have a bad cold. How do you think I'm doing? After 6 months of his monthly cheshire cat greetings I had to move on!
You do have a point Jensue, we have more doctors to weed through here in America. Interesting though how no matter where in the world we live, we share the same concerns when it comes to finding a doctor who's compassionate, educated and makes an effort to keep him/herself appraised on scleroderma.
Georgette, your suggestion about requiring yearly testing for doctors on how to relate to their patients is a great idea!! Love it!
Hope you're feeling better,
Posted 12 October 2008 - 12:51 PM
Anyways, my experience, was that my morphea symptoms started, and my general practitioner had no idea what was going on. The morphea started as a bruised-looking spot on my breast, as well as a hard bump underneath the skin. The bruised spot became a couple bruised spots, and the bump underneath the skin kept getting bigger. I kept going back to my general practitioner with nowhere else to turn, sometimes he would tell me it is muscle, sometimes it was just breast tissue, and sometimes, he would tell me there was nothing there at all, his story changed every time, and he got really offended when I disagreed with him. He also sent me to a useless surgeon, who absolutely refused to do a biopsy until I saw a dermatologist, which had a wait of 6-9 months, and the bump/thickness in my chest was getting worse and worse, and tripled in size. My general practitioner even complained about the surgeon after, making me wonder why he sent me to him in the first place.
Yeah, it is discouraging when your doctor doesn't seem to be on your side.
I lucked out and a dermatologist opened a clinic in my area, he diagnosed the morphea on the first appointment, and did a biopsy to confirm. I've been going to him for a year now, and although we haven't been really successful with treatment, he is doing an awesome job!!! He is very to the point, and has always told me what to expect, and I really appreciate that. He's an awesome physician, and he knows a lot about morphea too.
And as for my general practitioner, he's become my former general practitioner. I just avoided going to him after I saw the dermatologist, and finally found a new general practitioner in February, who is the best! He is so compassionate, and he seems to know his stuff. He knew what morphea was, but I am the first person he has seen with it. But he has a lot of interest in it, and isn't afraid to admit that he doesn't know a ton about it. He is great to talk to too! He keeps an eye on things as well, which is really good, and it is the way it should be. I learned when I went to him, that I have borderline high blood pressure, my former general practitioner never ever checked it. I've been seeing him monthly and we're trying to get the bp down. It's just nice to have someone on your side.
It took some time, but the doctors I have now, were totally worth the 5 months that I waited to see what was wrong with me. It does get better, and you will find a doctor who cares. Sending lots of hugs to you! Good luck!
Posted 12 October 2008 - 01:20 PM
Posted 13 October 2008 - 12:59 AM
Second Rheumatologist pretty much I don't remember. Not anything significant, but if you didn't meet every single criteria then nothing is wrong. I suspected Sjogren's before anything else, but I didn't have sores all over my legs, so it must not be that he said.
Third Rheumatologist now admits that there are some slight symptoms, but cut me off when I started to tell him my list of things that are "not right". The blood tests show slightly elevated ANA, but not the other scl-70, ssA and ssB, etc.
I saw a Rheumatologist that was a specialist in Lupus, (that is the person my insurance would let me see even though there is a scleroderma specialist at the clinic they let me go to). She thinks it is a sclero like problem, and probably Sjogren's but won't give diagnosis without lip biopsy. I've decided I'm not submitting to the biopsy, they can miss and I've heard it is quite painful. She said I should have a serum electrophorisis (spelling?) but she couldn't order any tests per my insurance.
I'm going to see a new doctor soon. My primary care doctor sent me to a neurologist when I first described my troubles swallowing. Within a few minutes of that appointment, he said he wasn't the right person to see. He didn't know who I should see. I've been to a GI, who in less than 3 minutes of talking with me ordered the endocscopy, but didn't really seem to want to discuss what I should do when it didn't show much other than GERD. He dilated the esophogus at the lower end, but didn't help my swallowing.
I just was at the ob/gyn doctor for annual check-up. I described what is going on, and she was sympathetic, but didn't really offer any type of help. She did say that I might want to change to a different primary. Thought the internist would be a good start.
I'm debating about bringing in all my records, or just go in cold and see what this new doctor thinks. I sometimes think I get the poor service because I've been doing my own research. Do they feel threatened that we are going to stop seeing doctors and doctor ourselves? I thought about trying to play dumb and just keep bringing up all the problems I've been having and see if they can connect the dots, or at least try to.
I'm fed up with doctors. I keep getting to this point, where something is getting worse, I try to figure out what is going on, get frustrated and give up.
Best wishes to all, thanks for reading my diatribe.
Posted 14 October 2008 - 08:44 AM
That's fine on the subject of diabetes. I know enough to know when the doctor doesn't know. But I now have problems and except for what I find online I know next to nothing. The rheumonoglist did not see a problem. Another doctor following me for a lung problem did a lot of test of autoimmune problems. He told me to take the test to the rheumatologist. I did and she looked at them and said she didn't know anything about them and the ONE test she did was negative. No problems. Back to the lung doctor who said get different rheumatologist and take these records. I did and that doctor seemed to be in the know at least. Diagnosed sclero/lupus and a couple other possibilities. She gave me plaquenil saying have your eye doctor watch this. It did help but after a few months the eye doctor consulted with a retina doctor and said not to take it.
Back to the rheumatologist, she seemed personally offended by me stopping the meds. I was having problems with my mouth which I have an ongoing post here on that topic. She dismissed this by ignoring it. I had first gone to the dentist. He saw no problem. This site tells me that is not really an unusual problem.
I can handle diabetic related problems but know next to nothing about the problems I am now encountering. It is bad enough that it interferes with my life. So here I aim, licking my wounds (so to speak) except my tongue and mouth are too sore to do that. Now what??????
Posted 14 October 2008 - 12:58 PM
Posted 14 October 2008 - 05:49 PM
I am very careful to consider the time and source of all information I get as it could be dangerous to do otherwise. I search such sites as Mayo clinic as well as forums. Forums tell me what others think and may or may not be valid. When a group has the same experience it is noteworthy. If you do a Google search for diabetes type 3 you will find 3 totally different and conflicting information.
Great advances have come in many areas and this is particularly true with diabetes. Not living near my daughter for several years I had not kept up with what was happening. I did not know that type 1 was an autoimmune problem, just that that is what kids get. On line I found that is not good information. When I developed diabetes I knew it at the start. Being 69 it never occurred to me that mine could also be an autoimmune problem. I asked my general practitioner to do the necessary tests and they came back showing mine is an autoimmune problem also. The lung doctor found all these other problems within the same month. I now have at least 4 autoimmune problems and I'm fed up with doctors.
DOCTORS are necessary.
Posted 15 October 2008 - 07:09 AM
The Internet affords some sites for rating doctors - good for finding recommendations and posting your experiences, good or bad.