Monthly Archives: January 2014

I will post again soon

I am still on “vacation” from posting. I will begin to post again soon.

Since I last wrote I have had the injection into the bursa of my right hip and I must say that things have settled down. I still have some discomfort, but nothing like what was happening about a month ago. As soon as the bursitis was diagnosed, everything fell into place and I began to feel better, that is until I had a tumble down the stairs at home.

We continue to have family issues with regard to my father-in-law. He has been placed in an aged care facility, which is a lot better from him than being in a hospital. He is classed as a high care patient and that means it takes at least 2 staff to look after his needs.

Our last visit with him was short and sweet, and probably made both of us feel rather grumpy.

Happy New Year everyone

I am sorry for the light posting but for the time being this situation will continue. My father-in-law remains in a hospital until arrangements are made to transfer him to a nursing home.

My own personal life has taken its own twists and turns in recent months, commencing with my recognition that I was in an arthritis flare. It was most definitely not a fibromyalgia flare!!

What happened? To be honest I have no real idea how the flare started or that I was in the midst of the flare before I really noticed something was wrong. The indicator is called c-reactive protein, and it turns out the reading was quite high, at 58.6 and that was November 21. During the flare I had trouble hearing because the flare was affecting my jaw and neck. It is very hard to describe what took place. It took almost a week to get an appointment with my GP, and then he kind of stated that he was not surprised that I was in a flare!! I was given a pack of Celebrex to help bring the inflammation under control.

Now, this is where the whole story gets interesting because I had a visit with my specialist the following week, and he was not happy about that particular reading. I did not have any infections, there was nothing that could explain that high reading. He informed me that this could be serious with regard to what might be happening to my joints. Then it was back to my doctor to see what progress I had made with the 10 days worth of Celebrex… and yes it did help, a lot… and my hearing has improved considerably. It was on this next GP visit that I came out with further information about how I could not sleep because of the breakthrough discomfort during the middle of the night. The end result has been the diagnosis of hip bursitis.

So, on New Year’s Eve I had yet another appointment, this time to get an injection into the bursa. It has made a difference and I feel the hip settling down, except for yesterday when we went to a major shopping centre. Alas, for the time being I actually do need to use a supermarket trolley as a prop. I found it difficult to walk yesterday, and I did have an uncomfortable night. My fear right now is that there is also bursitis in the left hip!!

There are some things in my full life story where I have been in a constant battle. The story about getting a diagnosis for my arthritis is a story of a constant battle with people who were not listening to me, and were not seeing the whole picture. There are some doctors who certainly were willing to give a diagnosis, but the battle I have had because they did get something wrong has meant years of frustration.

My story goes back to the mid-1980s when I first had problems with my shoulders. It goes back a bit further because I was involved in a car accident and suffered a severe whiplash.  I visited a rheumatologist for the first time somewhere around 1987-1988. I was miffed at the way that he had dismissed me, as having fibromyalgia because he claimed that I would “get over it”; well Dr. Brooke was incorrect in his diagnosis. However, I am no longer miffed about his conclusions because I have come to recognize that at the time I did not have the markers that indicated that I have rheumatoid arthritis. At that time I was sero-negative for the RA factor, and I had a very weak ANA reading. There were no other inflammatory markers. Dr. Brooke did some tests which were enough to elimate me as someone who fitted the new description for those with Ankylosing Spondylitis, that is I did not have the blood marker HLA-B27. This reliance upon such markers is something where I disagree with how some doctors make a diagnosis. I acknowledge that Dr. Brooke did all necessary tests, including a whole body scan. Where he went wrong was to dismiss the signs of inflammation that showed up in that scan, as well as some other minor things. 

My next rheumatologist was Dr. Peter Keary in Townsville. He disagreed with the initial diagnosed, and stated that I had an underlying clinical arthritis, but he did not name the kind of arthritis. During my time in Townsville I was severely affected by humidity. 

Amongst the x-rays that I possess, there is a report that indicated that I have sacroiliitis. This is one of the indicators for AS. However, that has not been replicated during other examinations.

The second Canberra rheumatologist was the partner of Dr. Brooke. He is the one that has me feeling very miffed. I was sent to him by another doctor, and he was supposed to give me an injection in the shoulders. Instead, I paid a lot of money for him to do nothing, not even order fresh tests of any kind, to look in the file that Dr. Brooke had used, and then for him to tell me to go away because I had fibromyalgia. He refused to do the injections that would have calmed my shoulders. He was paid for doing absolutely nothing!!

In Sydney I saw two more rheumatologists. Dr. Lim saw me after I had the first of two more full body bone scans. He indicated that I had widespread osteo-arthritis rather than RA. His error was to dismiss what was happening to my fingers. Otherwise I truly liked Dr. Lim, and he had a whole body approach to trying to manage arthritis. The second specialist is a Professor working out of Royal North Shore Hospital. I was sent to him for a second opinion. He did not name the form of arthritis and he should have been able to name it as Mixed Connective Tissue Disease.

I returned to Canberra in September 2007. This was after I had fractured my coccyx for the second time. Prior to moving I had a bone-density scan which was quite interesting because it had identified that I was making a lot of bone in the pelvic region. I think it actually confirmed that I had fractured my coccyx.  In Canberra I made contact with a doctor I had previously visited, and who was in practice in my new local area. She sent me to another rheumatologist who was Dr. Kathleen Tymms, but her books were full and I ended up seeing Dr. Chandi Perera who was coming down from Sydney to see new patients once a week. I am so thankful to both of these people. For the first time I was taken seriously. When I ended up with shoulder bursitis it was Dr. Tymms who did the injections that helped to calm the bursa.  Dr. Chandi Perera did all of the tests to eliminate various possibilities before he gave the diagnosis of Mixed Connective Tissue Disease, explaining to me that I could go either way, into Lupus or to RA. Everyone forgot about the possibility of yet another one, Sjorgren’s Syndrome, and I have some features of that particular disease (secondary, not primary). I am very grateful for the attention of Dr. Perera, and that is why, when I moved again and ended up with a rheumatologist who is an absolute prick, I was left feeling shocked and angry.

The issue with Robert Baume is one that involves a super-sized ego. He thinks that as a rheumatologist he is better than everyone else. His manners towards me were disgusting. On the first visit I was left feeling very angry. He made his subjective evaluation that my problem was fibromyalgia based upon a cursory examination, gruff questions that got out wrong answers, and a supposition that is in fact quite wrong. From that very first visit I felt extremely angry, and did not want to go back to see him. The next visit was worse than the first visit and I nearly had a car accident on the way home after that visit because I was so upset by his rudeness.

The assumption made by Dr. Baume with regard to whether or not I have RA was based upon what is known as the anti-CCP. I do not have those antibodies, but I am positive for the RF, which had risen to something like 64 before treatement with methotrexate, and it had fallen to about 39 when I first went to visit Dr. Baume. He claimed that I did not have RA because I tested negative for the anti-CCP but he is wrong because not all patients with RA test positive to this particular thing, PLUS, it is more of an indicator of aggressive disease that is causing joint damage, and that means if one does in fact test positive to the anti-CCP then that is a sign of joint destruction, not just that the person has RA!! Dr. Baume took me off the Plaquenil and he reduced my dose of methotrexate. My view is that his actions might have been the trigger for the flare that I have been experiencing. (even if I think along these lines, I have no intention of taking out a lawsuit over the way I was handled).

I have accepted that it is possible to have underlying fibromyalgia because that is compatible to having RA or even OA. Fibromyalgia affects the muscles etc. However, with Fibromyalgia there is no inflammation markers. It is on this point that I have no issues with the diagnosis of Dr. Andrew Brooke, and that is because the markers of inflammation were either missing or were very weak when I was his patient for a short time.

I have seen my new rheumatologist twice and I am a lot happier. The anger is now gone. What is interesting is that his questions stimulate me into looking back, or even writing down what is currently happening. His approach is funny and he puts me at ease. I will have more questions for him regarding any possible link between the inflammation due to hip bursitis and the high inflammation marker reading for C-reactive Protein or CRP.