BLOG 34a

05 February 2011

Hello to all my friends & supporters,

I have almost been thinking about avoidance of writing this blog....putting it off until I get myself and my medical treatment 100% sorted. Getting this out there is part of my journey and even though I am disappointed - I must write and inform. I think now I am getting a new medical path sorted, I am figuring in my mind & heart what I really want....and all of the below will explain. I have shed a lot of tears about what I am about to update.

In January, we were all ready to commence with SCT and fix this R leg. We were shocked and amazed to find that my 2nd Hematologist had changed his mind regarding the cause of my weak R leg, dropfoot & pain. Since late August, 2010 - I have sat patiently and waited with my family for more evidence to surface. Transplant had been halted, due to Neurology's opinion that we required more evidence and wait until my bloods had increased for a safer treatment regime. Hematology had endorsed the delay and although they gave me the option to go forward with transplant, they highly recommended that we don't and wait as suggested.

Whilst we have waited, my R leg has become weaker, my R foot is dropped and I now require a brace on my R foot. Nerve pain has increased. December/January 2010-11 - I started to notice more odd symptoms occurring with my speech, arms & hands. I presented all of these to my current Hematologist & Neurologist - I have kept a tab of everything. As I keep a health log of key dates and key symptoms....what is occurring in my body and at hospital.

After my 3rd Neuro consult in January 2011, Hematology told us that although (again) I was free to proceed with transplant - HOWEVER Neurology opinion had now well and truly changed the opinion of Hematology. We were told that even if we were to proceed with SCT - these doctors doubted that transplant would return my leg to normal. Why? We were asking this also - this is why I changed hospitals in the first place, to proceed with transplant (to save my leg). I would not have gone to all the effort to do so - if my referring medical team had not endorsed this decision and the recieving team weren't happy to have me. Everyone was clear on the mission - we were all on the same page....now - not so.

The basic opinion now was that Lymphoma was not causing my leg/foot & pain problems - 'possibly an unknown Neurological health condition or (wait for it) Anxiety'. We were agasp - not only had we waited patiently for the right time and obeyed all our instructions. Now, we were all completely off the page and onto a unbelievable & incorrect book. During this past waiting time, I had been doing my own research into nerve roots and Lymphomas....I had come across a specific disease that sounded very similar to my own situation and papers & research about this, was ignored.

You can say (at the very least), that I am completely not happy with this - not in agreement at all, with this opinion & very unhappy with a number of issues (I have professionally & diplomatically actioned my concerns in the form of correspondance). Nothing, apart from what was intially explained to us was given to us - however, upon speaking to a Phycologist - she explained a condition called 'Conversion Disorder'. Upon reading this, I was disgusted that this is now the opinion and disagreed even more.

What happens now: I have already visited another Brisbane hospital and after an ER full neurological exam, was told they would send they're Neurologist an urgent referral. I will be following up with his office soon. I am working also with my GP to monitor my symptoms and gather a 2nd, 3rd or 4th opinion, including trying to obtain a 3.5 Tesla (higher resonance) MRI to scan nerve roots and see what cannot be seen on regular MRI equipment (there is only one in my state of Queensland). Even if I have to seek assistance in another state of Australia or MAYO, I will do so. My situation is currently urgent, but I refuse to return to the same opinion and will not allow misdiagnosis to re-visit me. Certainly, having a less dangerous diagnosis would be better....but, I have been here before and until we have firm answers....I will continue to search and blog when I have more answers. I should have my own episode of 'Mystery Diagnosis' dedicated to my story. It's been 1 year now of searching once again. We must treasure every day and thank God when a day without pain or illness visits us.

I am now writing more and have a NEW & entirely different additional blog (from a non-medical aspect).

Love to you all, Jodie G.