HCV Positive

This blog is a journal recording my personal experiences with Hepatitis C.

Location: United Kingdom

I have hepatitis c, genotype 1b and started 48 weeks combination treatment, pegylated interferon alpha 2b and ribavirin in August 05. Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks. I am not sure at present what the future holds.

Tuesday, January 10, 2006

Neurologist appointment

Before I proceed with this post, I would like to give my sincere thanks to those who contacted me privately after reading my marathon post, for their most valued support and advice. To have this input from others within the blogging community who truly understand this disease, and in many cases have experienced similar problems with the NHS, helps in that one feels less isolated on this sometimes lonely and difficult road.

When I finally attended my appointment with the neurologist 5 January, I thought I had prepared for this really well and had written down all my symptoms so I wouldn't forget anything, but even now while I'm writing this I realise I had forgotten a couple of thing, never mind, it probably wouldn't have made any difference.

The consultant listened carefully whilst I relayed all the symptoms to him. At one point he interrupted me as I had been trying to describe the incessant involuntary, rigid tensing up of muscles that occurred durng treatment and is still with me to a much lesser degree, when I had used the term dystonia. He asked me who had told me I had dystonia. I explained that in an attempt to find language to describe my symptoms I had looked things up in my family health encyclopedia and found this which term appeared to describe what I had felt was happening to me. (This was the The British Medical Association Complete Family Health Encyclopedia, published by DK).

The Neurologist explained dystonia was a condition not a description, I was grateful for the correction and apologised for using the term incorrectly and endeavourer to use other words to reflect this strange phenomena.

He realised from what I was saying that I had tried to research what possible causes there may be for my symptoms and he asked me what I had thought the problems may be. I told him honestly that I had no idea but because I had HCV I had wondered whether it was an extrahepatic condition related to the virus perhaps vasculitis. I told him that on the other hand I had also considered it may not have anything at all to do with HCV and had even wondered if it may be MS.

He then directed me to an examination cubicle and told me to take my shoes off while he examined my feet, testing reflexes etc. Whilst I was getting ready for the examination he began to dictate a letter to my hepatitis consultant, into his recording device, asking him for further information regarding my condition.

He then proceeded to dictate his notes into the recorder, he was going through my history from my file, malaria, yellow fever etc., and also dictated a note on the results of each consultant I had seen over the years, the rheumatologist, I'd had an ECG some years previously with negative results, gynecologist for endometriosis etc. Then he came to my hepatitis consultant's notes and he began to read something my consultant had written aloud into his recorder. As far as I can recall it went something like this, 'I have had difficulty convincing this patient that her hepatitis c is very mild with minimal damage. She is anxious and does not appear able to accept this.' I knew then my fate was sealed! After this I was conscious of the consultation with this man taking a different gear.

The neurologist concluded that he didn't think there was any of the things I had mentioned wrong with me, which was good, but that all my symptoms were all due to anxiety. I disagreed with him that it was all down to anxiety, I bravely said I felt that my hepatitis consultant's comments had swayed his judgement, not only that, but I felt what my consultant had said was not strictly true in that I had no difficulty at all accepting my hepatitis c had done little damage to my liver according to the biopsy 5 years ago. (I do wonder if there has been progression of damage to my liver in 5 years, but I did not mention this.)

He told me the doctor patient relationship cannot work if the patient does not believe or trust her doctor. He says my remark is casting doubt on his professional integrity, that I could go back to my GPO and request a second opinion etc.

He then went on to say that I had also been tested negatively for vasculitis in 2001 and that I had received a letter informing me about that. I told him I had received no such letter and I was unaware of any such test, I pointed out that I was extremely sick in 2001 after almost dying with malaria. He pulled out the letter, it was a letter to say the rf factor had tested negative after an earlier test had shown a mild positive result, there was no mention of vasculitis in the letter. He went on to explain that the type of tests spoken about in the letter would have identified any vasculitis. I accepted that that may be the case, but the fact was I had not received any letter informing me I had tested negatively for vasculitis and he was incorrect in asserting that I had this information.

He continued to again refer to dystonia, emphasising that I did not have this condition. I thought we had cleared up that point earlier, before his very brisk, and I mean brisk examination.

I felt I was fighting a losing battle, if I disagreed with him, he accused me of not trusting him in which case we could not proceed. He told me he would not carry out any scan tests, because if for example he found a aneurism it would only make me more anxious. I cried tears of frustration. He was going on about the aneurism and I have to admit I was not really listening anymore, I was trying to understand how we had got to this point of dismissal. He was speaking very fast which made it difficult for me to understand and process what he was saying. I just heard I was being fobbed off.

I have never denied being anxious, but I do still feel there is more to my condition than this alone. I was so disappointed to find there was no validation here. I also feel that my increasing stress and anxiety levels are directly due to the inept and piece meal medical attention I have been receiving since I first stepped foot on the treatment bandwagon and especially when treatment was withdrawn.

My reluctance to accept that all that I reported to the neurologist is solely down to anxiety is, to a large degree, due to the fact that for years I have laboured with vague, non specific, but remarkably debilitating symptoms, and being told time and again that its all due to anxiety. Then hey, quite by chance I am diagnosed with HCV and low functioning thyroid! So Hello Tokyo!!!

Further when I lay in bed wasting away with malaria, my GP made 2 home visits and even when I told her I had just come back from a malaria zone, she failed to recognise the life threatening situation I was in and diagnosed a sore throat! When I eventually got to the hospital, after my GP told my sister she was too busy to come visit me again, I was rushed straight in for a complete blood exchange which went on all through the night. I was so close to death, I was held up as a trophy of success in the hospital. The staff could not believe I had survived, so I praise God.

So please excuse me for having a problem accepting everything I am told by medics at face value. I would be dead today if everybody did that. There are other examples where I have been wrongly dismissed that I could cite but I'm sure what I have said is enough to illustrate my point.

I tried to be reasonable and asked the neurologist how I should deal with the symptoms, he said he could refer me to a psychiatrist. I am reluctant to see a psychiatrist because of the implications it may create with regard to my work. I am willing to give this serious consideration but only if it is absolutely necessary. This is freaking me out now, it is not where I expected all this to lead.

He began to dictate a letter to my GP, I heard him suggesting that it may be helpful to give the patient seratonin uptake medication. I had to interrupt him to explain that I have reacted badly to this medication. It seems this is the answer every medic I have seen has suggested so far, and when this is not viable there is nothing else.

He told me to come back in 10 months, when I cried tears of anger and frustration and challenged him, he offered to see me in a month.

I left feeling utter defeat. I am left to my own devices and take advice from others with hepatitis c on the forum and more privately off the forum. On the forum I post 2 questions, the first about symptoms, the second about the neurologist. You can read that by following this link.

From the forum I received a number of very supportive comments and helpful suggestions which take the sting out of the neurologist experience. I am overwhelmed with what needs to be done regarding instigating changes which may or may not improve my overall healthcare. Considering the time scales for any results to come from the following actions, right now I just don't want to go there, I simply do not feel strong enough at this juncture to take all of this on.

Write letters of complaint to the PCT, same to the hospital trust, write to my GP, change my GP, write to the hospital to get copies of my medical notes, write letters to dispute comments written therein. Write a letter, get a second opinion and change my hepatitis c consultant. Write a letter, get a second opinion and change my neurologist, etc.,etc., etc. Overwhelming but valid advice nevertheless. I was given very useful information by forum members and fellow bloggers about getting assistance in the form of an advocate through the Hep C Trust with all of this.

I can just see the result of me doing all that will be to prove what I believe the medics already think, that I am neurotic, that I am difficult, etc. I can see years of my life slipping down the pan while I get caught up in madness and bureaucracy, fighting to be acknowledged, getting sicker all the while.

I am advised more privately by others who have gone before me that I will just get sicker and sicker if I try to get some validation of my symptoms from the medical profession. The negative impact of taking this route, of trying to identify what is causing my symptoms is creating the type of stress that I should be avoiding like the plague. I may need to accept that I may have to manage these symptoms alone and unaided. I am soothed by these remarks that do not demand any more from me than I can manage right now. I realise I have to recover before I can proceed further with any of this.

I had another appointment with my hepatitis consultant on Monday 9 January, I felt I should proceed with that before I came to any conclusions regarding my present circumstances. I am fortunate that another blogger Paul Overcomer and his wife Sarah very kindly offered to support me by accompanying me to this appointment and I thank God for this and for them.

I will tell you what happened with my hepatitis consultant in my next post.


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