My road to diagnosis.
Finally an answer, but limited help.
After more than a year running down the doors of hospitals and doctors, performing all kinds of tests finally a helpfull and understanding rheumatologist at Diakonhjemmet Sykehus (A Norwegian hospital) asked me, after running bloodwork and listening to my story, if I was bothered with my eyes and mouth being dry, and if I used eyedrops occasionally, I answered yes I did, but at the moment this was the least of my problems! Well, I think you have Sjøgrens, she said, you have also tested positive for SS-A, she continued. She wrote "suspected Sjøgrens" as diagnosis and after two days in hospital I could go back home. Finally I had a name for my disease.
It was a shame though, after I finally found someone with experience about my condition and who at same time took me seriously, a combination I wasn't used with, she was not able to follow me up further. Diakonhjemmet apparently doesn't follow up Sjøgrens patients anymore due to a "dividing of functions". I can understand the reasons for centralization, but it didn't benefit me as a patient in this case. So I was back on the search for a specialist who could follow me up, show some understanding and give answers to questions as they occured. But now at least I had a pretty good indication about what was wrong with me, and that was of great relief.
So they sent me to this local rheumatoid hospital, Martina Hansen Hospital, being turned down by one of the major hospitals in the country. I was assured that it was suppose to be just as good. I don't know if that's the case though, I guess I'll never know, since I never experienced the one that turned me down. The doctor at the local place greeted me in a surprising way, after I had been waiting too se him for two months, his first sentence was: "I don't understand why you are here, ...with me... there is nothing I can do for you." And when I told him about my symptoms he said, "This can not be right, Sjøgrens can not give these symptoms, it only gives dry eyes and mouth". I told him that over the nearly two years I had been searching for a diagnosis I had been in contact with quite a few people suffering from autoimmune diseases, and many of them complained about the same diffuse symptoms as I did, and since I had been so thoroughly investigated for other illnesses, wasn't the most reasonable conclusion that it was the Sjøgrens that was the cause of my pains? His answer to this was, "I have worked with autoimmiunity for 30 years and not everyone agrees with you about that." I gave him up too. If this was "as good as it gets", then it didn't matter where I went for help.
Later I found a paper by one of the leading professors on Sjøgrens in Norway confirming that many of my complaints are normal with Sjøgrens patients. The paper was from 1996 and you can find a link to it (in Norwegian) on my page. The rheumatologist I had to deal with this time obviously had not caught up with the paper 12 years after it was published. My only expectations, namely to meet someone with knowledge about my disease, that could follow me up once in a while and be my support in the time ahead, or at least someone just saying something like: "Yeah Martin, I know, you've had quite a rough year haven't you?", was shattered. Were my expectations too high?
Mixed experiences with a stubborn race.
Another doctor, in an effort to answer my question about how the individual deviation in calcium levels in the blood is calculated, started his answer like this: "You see Martin,... when we measure deviation, we use "something called standard deviation" then he stopped, like there was no point in continuing as I would not understand anyway. I asked him if he by standard deviation meant the root of the variance and showed him some simple statistic calculations I had done regarding my calcium and vitamin D results, with no response, I gave up again. I knew that my calcium homeostasis was affected, I knew I had symptoms as described in the medical literature from this, but it was just like because I, the patient, suggested it, the doctor would not give me right or support. Unbelievable. Having read about other patients with autoimmune disease telling their stories about the struggle they have experienced with getting acceptance from their doctors, I now realize how naive I was at that time.
Maybe some doctors have a hard time with modern patients having access to information about medicine online, or problems with patients that expect to be taken seriously, and to play an active role participating in the work of a difficult diagnosis. I have not met any other professions acting quite like this. When I was working in business we often worked across fields, to be more competitive we would welcome ideas and input from all departments be it marketing, finance, logistical, HR or operations, its simply the only way to survive and keep client retention. Maybe the healthcare industry needs more competition?
Some thoughts around the patient - doctor relationship
Doctors should greet their patients with respect, especially when they neither can explain the underlying reason for their patient's pains, nor can offer a treatment to cure them, as is the case with most doctors and all chronic autoimmune conditions. And if they for any reason are unable to mobilize such a respect, then they should try to mobilize sympathy, regardless of how hard they find it at times. I think they would be surprised of how much maltreatment would be forgiven if they only met these patients with just a little compassion, besides, its their job and privilege to do so. The patients seeks them on their spare time, healthcare personnel on the other hand are on duty. Nobody wants to go and see doctors time and time again only to sit and cry and complain about pains and symptoms, everybody would rather be busy living a healthy and painfree life.
When I told my public appointed GP about the hypothesis that intracellular microbiota could cause autoimmune diseases and chronic inflammation, she suggested I needed to see a psychiatrist. That's quite "frisky" from a GP who I believe mainly works with prescribing penicillin, prednisolon and plastering kids. Especially when considering the results presented by scientists working with CWD Bacteria and its role in disease. Anyway, after fighting for answers on my own for a long time and battling constant pains I was nearing exhaustion and already seeing a psychiatrist. I needed someone to talk with that was not judgemental or skeptical, and that had the time to simply listen to me. Talking with her was very helpful and as far as I can tell a perfectly normal response to the stress I was under. I believe somatic doctors can learn something from good psychiatrists about the value of human compassion when dealing with patients.
If you are having a hard time communicating with your doctor, don't give up, and don't let them drag you down! Just don't let them run over you. It is allot easier for them to "prove that you are not sick", than for you to prove otherwise. Trust your symptoms and your body. Nobody chooses to be sick.
The importance of a supportive GP.
Telling you about all the doctors that have been involved in my disease and diagnosis I cannot even start to tell you how much I appreciate my private GP. Without her I doubt I would still be around, she has been with me since I first started to feel ill two years ago and knows about all the things I have gone through. It was a coincidence that I came to just her for help. Being busy finalizing a major project at work I just booked a consultation randomly from my car after holding the final presentation for a client, not even knowing she worked in a clinic specializing in nutrition and overweight, which was not exactly what I had in mind, I just had these strange chest pains, tingeling feelings around my face and trouble swallowing, that would not go away, and needed to see a doctor. I had stopped seeing my public GP a year or two in advance because I didn't have the time to wait for an appointment, so instead I used to drop in during lunch hours at a private clinic if I had a cold, or simple opportunistic infections that needed care. Anyway, thanks to her standard procedure of performing a wide bloodwork analysis of all new patients we found the calcium being slightly too high, and the 1,25 vitamin D being off the charts at 235 pmol. This led her early to consider if I was suffering from some kind of autoimmune inflammatory disease and kept her writing applications to specialist after specialist as my condition got worse, even if none of them could give us any answer to what caused my symptoms. The GP I currently have assigned by the government however is completely ignorant and seems to live in a bubble-like reality, or maybe she just doesn't care about her work anymore, that can happen to doctors too I guess. Luckily we are allowed to change our assigned GP and I plan to do so. I am not asking for a miracle cure from a public GP, just to be believed that what I experience is real, and that they are aware of, and take the complications following a Sjøgren's disease seriously.
Even though, as I guess you have understood by now, I am generally quite disappointed by the treatment I've received in parts of the healthcare system, let me stress that I have met nice, emphatic, hard working and genuinely interested doctors too. I also understand that they are working under pressure when battling the enormous amount of disease out there, and that I am some kind of rare case. What is a shame, is that the lack of fate generated in oneself, and the medical community, when exposed to maltreatment, most likely destroys the efforts of other healthworkers, who do their best for their patients. If it didn't, I wouldn't have spent hours designing this page telling my story, and sharing my frustration.
The lack of knowledge about groundbreaking new science uncovering the cause and offering treatment of autoimmune disease can also be discouraging sometimes. I believe however that more and more evidence are showing a link between chronic infection and autoimmune disease, and that medicine will se a generational shift in the coming years when it comes to trying a different approach than the current, it having failed for more than a century. Thats why I have included resources for you to investigate on your own
