Uncertainty causes anxiety

I agree completely. I have experienced a GP who had me called to come in from work to discuss a pathology result. He had always been reluctant to share medical reports with me in the past and I never ever received copies of those reports. When i got there he said he had no idea what it meant and what did i want to do about it. Because he hadn't written the path request form ( it was written by the workplace occupational physician following pain developed from a fall in the workplace and organised the results to be sent to my GP.He suggested I take a copy of the result and do some research on what it meant. The same path report also indicated a elevated rheumatoid factor. I had asked the occ physician for the name of a female rheumy in Melb. She is still my rheumy.

I had the neurosurgeon try to convince me that a 5+mm synovial cyst at L4/5 growing into the spinal space should be left alone and not removed. I had no neurological response in the left leg. IM morphine last 2 hours. The next 2 hours were a nightmare of pain. I demanded a laminectomy before the nerve was damaged. When requested for a reason for this cyst developing he told me it was because of movement in the lumbar spine. I had a repeat cyst develop 9 months later. from the time of the MRI to the date of being told that i had another cyst, it was over 3 weeks, with 9/10 to 10/10 pain. The style and other symptoms were identical to the past one. I did further research that showed this type of cyst recurred 1 in every 10 patients. Once again he tried to talk me out of surgery even though it was a copy cat with exactly the same signs and symptoms. He did not tell me this could be from RA. After stalling me for 3 months more I demanded he act. He has refused to see me as a patient again. I only found out about the size of the cyst and the nerve damage by reading the patient files that at that time were kept in a cupboard just outside the individual rooms.

As time went on I changed both GP and Neurosurgeon. once she got to know me and my trained background. my next GP would have the reception staff give me a copy of all pathology results without me having to make an appointment then the Practice changed its practices and you had to wait at least a week but sometimes more to get a followup appointment unless she had specifically noted in my file that I needed a review asap, That in itself was a worry because an early or immediate appointment meant there was something wrong but I wouldn't know what until I saw her.

I have a new neurologist these days who takes a holistic approach to the patients care. She will arrange an admission to the private hospital if I call her an tell her my health had deteriorated for whatever reason. She would then get all the tests done that I needed within a week. She would come to my room as soon as the results were in and she was not consulting in her rooms and give me a copy of the results and give me time to read them through; mostly overnight but if it was really important she would discuss the implications of the findings. Some times she would give me extra reading from articles she had, while other times she would suggest I Google search the topic and consider if it was for me. If there were implications outside her field she would arrange other specialist to talk with me and arrange further testing or treatment as necessary. It was through one of these scenarios that I came to be the first patient in that hospital with RA induced small fibre neuropathy to be treated with IV Lignocaine. The five days of the trial drug gave me 6 weeks of relief from the symptoms. The next time it was 10 days and that gave me 4 months of relief.
It was with mied emotions that i was diagnosed with infiltrating lobular cancer in my left breast. I had the results of the large needle biopsy within 48 hours. I was referred to a Professor of Breast surgery because the younger more comfortable doctors to be with refused to treat me . I was too high a risk of complications. The professor saw no need to see me in under 10 days nor do the surgery in under 4 more weeks. He wanted due diligence satisfied by snail mail as only the public system can deliver. The wait for the pathology took a further week. Then there was the 2 hour wait in the clinic waiting rooms. I was not offered a copy of the report. I was on;y after I was referred to another hospital for radiation therapy did I get a copy of the path report and I found there were cells in the first sentinel node. None of the surgical team explained this to me. It was a simple: We got it all. I eventually find out that that was the role of the oncologist in that institution. The oncologist explained that because the cells were very small and not clustered they ignored this. It remained a Grade to cancer and because of my age I was offered Anastrozole. if I couldn't take that then there was Temoxafen. It was only when I went to another onco,ogist for a second opinion that I found I I should never take Temoxafen because of my past history of repeated PEs. I could have Chemo because my autoimmune diseases were so advanced it would kill me. And that there were 2 other drugs other than Anastrozole that might be better for me and cause less joint and muscle pain. I start the new one when the first is well out of my system. Having stopped the Anastrozole my INR has jumped from fluctuating between 1.0 and 2.6 to 4.2 today. My S/c Orencia bled profusely this afternoon.

My Warfarin is pathology lab dosed except when I'm in hospital. Tonight I text-ed the hematologist that my cardiologist and neurologist involve when I'm in hospital. The path lab had said to stop the warfarin for 2 days and resume on 6.5 mgs then get retested on Monday. If you have a serious bleed go to the nearest ER. The hematologist said give yourself 100mgS/C Clexaine as a starter and see what your cardiologist and GP want you to do, The cardiologist has not answered my page so i will have to try him again tomorrow, Tomorrow I am going to get the GP to write a referral to the hematologist. I only had the extra INR test today because i was scheduled for a cataract removal tomorrow. It has now been cancelled until my INR is stable again: More blurred vision to be endured.

Is it any wonder that people with advanced medical conditions develop reactive depression and fail to pick up after treatment when this sort of rubbish is being dumped on them. It is only that I have a health back gound that I am one step ahead of the pack. As my rheumy said to my husband in 2008: if J. hadn't had the courage to take Methytrexate when she did in 2004, she would be in a wheelchair by now, the RA and others Arthrises are so aggressive. She has been proactive rather than reactive.

God bless and keep you all