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

We left off in July 2013 where I was on medical leave and my health had deteriorated again to the point where I had to see a doctor again. And again it was Dr. M.

My core symptoms were the same, but more symptoms were popping their ugly heads out! I had the normal weakness, numbness, tingling, fatigue, body pain and headaches, but I also had chest pain, low-grade fever with cold sweats. My confusion, forgetfulness and concentration was also getting worse. In addition I had developed a left hemiplegia where all my weakness, pain etc. was predominantly on the left side of my body.

Dr. M – as was the norm by then – hospitalised me immediately. He was going on holiday though and left me under the care of a specialist physician Dr. K. He was nice man, great laugh, does a GREAT lumbar puncture with lots of drugs :), but again I didn’t receive optimal care – far from it. I received antivirals, vitamin drips and some cortisone in addition to my normal medication. Nothing more.

By now I was quite convinced that it could not be viral encephalitis again. And since my doctors were obviously failing me I decided to take matters into my own hands. (If only I had done this earlier! Hindsight. Such a bitch.)

I started off by contacting the Encephalitis Society in the UK (http://www.encephalitis.info/) and I have to say they were absolutely amazing! I wanted to check whether there were any cases of encephalitis that presented with A. my symptoms and B. my strange test results or lack of any positive test results! The answer was no not really. I also wanted to check if there was such a thing as recurring or chronic encephalitis. Again the answer was no not really. There is a rare exception called subacute sclerosing panencephalitis, which refers specifically to a type of encephalitis which can follow natural (wild) measles virus infection, but this was not applicable in my case.

Reviewing the information on the Encephalitis Society website again today and taking into account a segment called ‘Brain on Fire’ on Carte Blanche (a South African TV Show) I somehow think that is possible that at some point I had NMDA-receptor antibody encephalitis – because not everyone tests positive for the antibody. I don’t however think I was ever tested for it as this requires bloods to be sent overseas. (But don’t quote me on this one! I am not a doctor! I am just (still) trying to figure out how it all started and what was initially wrong with me.)

With the help of the Encephalitis Society I identified other possible diseases such as transverse myelitis and peripheral neuropathy that we could consider.

I passed this information on to Dr. M and Dr. K. I asked them to consider this and other diseases and also test for them. At no point  autoimmune diseases were considered, although the symptoms were there. I also got the impression that they didn’t appreciate my point of view and requests for more tests. In addition only an MRI was done and an immunoglobulin test was done. Although I requested autoimmune blood tests again they were not done. They didn’t even try – and that was the end for me!  Even my psychologist Dr. W expressed his dissatisfaction and astonishment at this. I later heard about several of Dr. M’s patients that experienced the same issues some with serious impacts on their health. It just made me sad. 😦

I was getting nowhere and I wasn’t getting any better. While still in hospital I tried Dr P’s (the Wonderful) office again and managed to get an appointment with her for early August just after I was supposed to be discharged. HALLELUJA!

To make this 3 week hospital visit even more stressful my medical aid initially refused to pay for my hospital visit. The reason they gave was that I could not have encephalitis so many times, which I agreed with. I explained to them that my doctors were looking for a correct diagnosis and it took several motivation letters to get their approval. The most infuriating moment was when the medical aid contact person insinuated that I was possibly not sick at all and just in hospital to try to get pain medication. To say that I lost it when speaking to her on the phone was an understatement.

In addition I was still waiting for my insurer to re-approve my medical disability and start paying out my salary. At this stage I had been without a salary for 3 months! Eeeck. After several motivations and escalations it was finally approved on the day that I was discharged from hospital. I cried from relief and joy, because I didn’t know what I would do if they didn’t approve it.

During this time my Granny Lovey also passed away – very gently just as she was. The irony was that I was about to phone her to hear how she was when Mom phoned me with the sad news.  Again, I couldn’t go to the funeral. 😦 I never got a chance to say good bye.

Throughout this all my Mom, Sister and the Viking were tremendous and as always I wouldn’t have made it through without them. And then there was my best friend Little J that called me every day too.

So I had hope again. I couldn’t wait to finally meet Dr. P (the Wonderful!) She was everything that I hoped her to be and she is to this day still my neurologist and primary care provider. Dr. P (the Wonderful!) is the doctor that changed my life!

That being said getting to a correct diagnosis would still take time. Knowing what I know now about autoimmune diseases and their deceptive nature I realise that this long process of diagnosis and misdiagnosis is the norm when it comes to autoimmune diseases.

Right off the bat the difference between Dr. P (the Wonderful) and Dr. M was the fact that Dr. P (the Wonderful) knew that recurring viral encephalitis was not the answer, but took steps to find out. New and finally the correct blood tests were done. They didn’t give a clear answer, but showed that my immune system was almost non-existent, that I had several viruses like coxsackie, herpes simplex, epstein barr etc. My body was a breeding ground for viruses and later this would make more sense. Interestingly enough I didn’t test positive for any auto-immune diseases. Dr. P (the Wonderful) said that I appeared to have a form of post viral syndrome and chronic fatigue syndrome (CFS.)

Dr. P (the Wonderful) took me off my anti-epileptics for the seizures I never had and put me on short courses of cortisone. She also referred me to a specialist physician who worked with natural medicines. Dr. G was very impressive and also gave me a lot of hope. He agreed that I didn’t have viral encephalitis and added that the epstein barr virus could be the cause of my illness, but that he also wasn’t satisfied with that as an answer. Dr. G put me on a lot of extra natural medicines which included vitamins and also products that his company (well-known in South Africa) produced.

I started feeling better and by September I could travel to Sweden with the Viking to meet his family and explore the country. It is one of top 3 holidays. I loved it – Sweden, the family, ABBA, IKEA and of course my Viking! 🙂 I also managed well from a health perspective and that was a big positive!

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My health stabilised and although I was feeling better I was not feeling good enough. I did however make it through the rest of 2013 without having to be admitted to hospital again! Big yay!

2014 held the answer to what the hell was wrong with me and I will tell you more about that in part 7 of my story.

Thanks for still reading my story! I wish only good health and happiness for you.

Xo

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