Red and the Big Bad Wolf

The story of me – Red living with Myasthenia Gravis or the 'Big Bad Wolf' as I prefer to call it

I embarked upon 2014 with a lot of hope and it would turn out to be the year with some answers. I was under the care of two very good doctors and my health felt ‘stable.’ I still didn’t feel healthy enough and thinking of going back to work seemed impossible to me. This made me very sad and didn’t help my self-confidence at all.

Anyone with a similar experience to mine will know that your self-confidence takes a huge knock once you become so financially, mentally, emotionally and physically dependent on others. You have a tremendous sense of helplessness and also this constant nagging feeling that you are no longer contributing to anything in your own life and those around you. The time at home – mostly alone – during the day sometimes felt like prison sentence and the boredom is soul-destroying. Overcoming this is no small feat and it takes a lot of time, honesty and support to do a 360 on this.

2014 started off with a big change. The Viking and I decided to move in together. We decided to take our time to look for a place, but of course we fell in love with a great place at a great price! So we had to move in 2 weeks. Nightmare! I had to pack up my place and rent it out and move in to our house in 2 weeks.

In addition the Viking’s family was in South Africa during February. This together with the move in caused a lot of physical strain and my health very quickly deteriorated.

I saw Dr. P (the Wonderful) to discuss my health woes in late February again. She was shared my concern and was more determined than ever to find out what was truly wrong with me. The way my immune system was responding was not normal and the fact that it appeared to be encephalitis again was puzzling. It could not be.  We considered two treatment options –

  • IVIG or Polygam infusion – Intravenous Immunoglobulin (IVIG) contains the pooled immunoglobulin G (IgG) immunoglobulins from the plasma of approximately a thousand or more blood donors. It has several activities such as improving your immune response , suppressing idiotypic antibodies and suppressing various inflammatory mediators.
  • Anti-viral and cortisone treatment in hospital.

IVIG is a more high risk treatment – though with good results – and as such must be considered after other treatments failed. It is also very costly and difficult to obtain medical aid approval without a firm diagnosis.

With this in mind we decided to go with a 5 day anti-viral and cortisone treatment in hospital and I definitely felt better – why would only make sense much later.  A lot of blood tests were done again, another lumbar puncture, a gastroscopy and a colonoscopy. In addition Dr. P (the Wonderful) asked an amazing specialist physician Dr. K to look over my case.

Dr. K immediately impressed me. He spent about an hour extensively talking to me about my medical history and examining me. It was a good thing and I even mentioned past medical events that I thought was irrelevant to my current situation. Dr. K ordered a few additional tests and with this as input he went away to fully assess my case.

I saw Dr. K again only after I was discharged from hospital. Based on my symptoms and the additional tests that he ran,  including a positive result for anti-nuclear antibody (ANA) factor,  he believed that I had systemic lupus erythematosus (SLE.) Emphasis on the word ‘believed’ must be noted – he believed but not confirmed that I had lupus. This is because my ANA result wasn’t a high positive.

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I didn’t pay enough attention to this subtle difference. I was elated that after 2 years I finally had a diagnosis. I had suspected that the culprit may be lupus. It all finally made sense!

Dr. K continued me on a short course of cortisone and also started me on immunosuppressant medication. Dr. K was also convinced that all the natural medication that Dr. G had me on wasn’t helping and was in fact adding strain to my organs based on the volumes I was talking. To be honest I agreed, the natural medication hadn’t really improved my health much and I hated taking all those pills every morning.  😦

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I would see Dr. K again in two /  three months.  I had to see Dr. G to. See I liked Dr. G and I did value his opinion. So off I went. He was mostly convinced about the lupus diagnosis, but he was not happy with the medication. Rightly so – cortisone and immunosuppressant medication is basically straight from the devil and hell on your body.  He wanted to continue to treat me with the natural medicines and I have to admit that I liked the idea of it. And I didn’t want to do more harm to my body. But then again I didn’t feel that much better on his medication and he owned the company that made the medication, which made me question his opinion.

I was confused! And I didn’t want to become a serial doctor dropper. I decided to continue on his medication and not Dr. K’s medication and told him that I would prefer that he treat me.  It would not be long before I changed my mind. And I needed the Viking to point out the facts to me again.

So back I went to Dr. K and told him everything – including that the natural medicine wasn’t working and that I really wanted to continue with him and his treatment.  He agreed and I continued with him. I was very happy with my decision.

I did feel like an absolute traitor.  I felt to bad to let Dr. G know and didn’t contact him. I only let him know when his EA phoned me to confirm my next appointment that I had forgotten about. So bad! I was becoming a serial doctor dropper that left without saying a word. 😦

I will end the story here and continue in part 8, which includes further revelations about my health! (And PS – throughout all of this I continued to see Dr. P (the Wonderful.) She was the glue that kept it all together and still is! :))

Xo

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