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I went to see my fabulous rheumatologist to catch up on my visit to the neurologist and my NCS/EMG test. The neurologist recommended that she treat my symptoms, which she has been doing since the very beginning, and place me on a drug usually used to treat Parkinson’s Disease. We have decided due to the side effects of this drug to try others first before going down this route.
I have been frustrated that I am yet to be diagnosed with anything and when people ask what is wrong with me I can’t tell them. My rheumatologist shares my frustration as she is annoyed that she hasn’t been able to find out what is going on. Therefore, I have been given a couple of labels which describe my symptoms but don’t tell what is causing them. I have a severe form of fibromyalgia and chronic neuropathic pain. What these both mean is that I am in pain. I am annoyed that they still don’t know what is causing all of these symptoms, but I know that my rheumatologist has done her best to try to find the cause. She told me that at this stage most rheumatologists would refer me off to a pain management clinic and stop treating me, but she refuses to do this and will manage my condition and keep searching for a cause. I really appreciate that she refuses to put me in the too hard basket and wash her hands of me.
She is referring me back to physiotherapy to get them to look at my gait (how I walk) and see if there are any problems there and work on an exercise plan to help get me off my crutches and back to as close to normal as I can get. Whilst I think that this is a good idea, it will mean more time off work which I can’t really afford. Work has been brilliant giving me time off work to go to all my doctors’ appointments, but there is a limit to their generosity and I don’t want to reach that limit.
My current medication has also been increased and I have been placed on more medication to see if it can bring my pain levels down in the hope that if I am not in pain I will be able to walk more. I am more than ready to get rid of my crutches, so hopefully with pain meds and physio I will be able to accomplish that.
I need to make my peace with the fact that a cause for all my pain and weird symptoms still can not be found, but I feel hopeful that we now have a plan to get me active again.