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 Рthough with good results Рand 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 ‚Äď 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.¬† ūüė¶

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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. ūüė¶

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

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. ūüė¶

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. ūüė¶¬†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! ūüôā¬†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

2012 ended well. I was feeling healthier and happier and I was able to spend a special Christmas with my family, which included our last Christmas with my Granny Lovey.

My Granddad passed away in July of 2012 at the ripe old age of 92. Nevertheless it was very¬†sad and I remembered the last time I spoke to him on the phone – it was my good bye because I could hear that he didn’t have a lot of time left. I will never forget that phone call.¬†I was¬†still in hospital¬†when he¬†passed away and wasn’t¬†able to go to the funeral. And so my¬†Granny Lovey¬†was left behind at 91 years of age.¬†My Mom’s side of the family becomes very old!¬†Thus Christmas and New Years were memorable and a good way to start 2013.

From the left is my Sister, Mom, my Aunt (she cared for Granny), Myself and in front Granny Lovey. :)

From the left is my Sister, Mom, my Aunt (she cared for Granny), Myself and in front Granny Lovey. ūüôā

Work was going well and I was almost working a full 8 hour day again. I also had the opportunity to travel to the US and the UK during the beginning of the year for work. I love travel and I especially love going to the UK so this was really special.

The Viking and I also got to know each other better and although we started seeing each other at the beginning of the year I ended it after a week, because I was not ready. I still had too much emotional baggage to clear. (And I was a horrible person! I ended via text message while I was in the US! ) After that we kept our distance for a while – he was angry – I was confused, mortified, stupid¬†and angry.) The distance¬†didn’t last and by March we started talking to each other again. Realising that we missed each other.

By March of 2013 I could feel that my health was slowly deteriorating, but I¬†managed to stay out of hospital until the¬†end of April. I¬†promised myself that I wouldn’t see¬†Dr. M again, but when the familiar symptoms were back in full force it was not that easy. I wanted to go to another Dr¬†that came highly recommended and that I have heard¬†so many¬†good things about. I tried to get an appointment with Dr. P (the Wonderful!), but she was fully booked and I had¬†‘no choice’ to go back to Dr M. (I should have¬†tried the ‘go to the¬†ER and hope¬†that Dr. P is the on call¬†neurologist that will see me’¬†trick in hindsight.)

Dr. M put¬†immediately put me into hospital and I received the exact same treatment. I can’t remember if Dr. M did a lumbar puncture to test my CSF for viral encephalitis this time either.¬†I think¬†at this point he just assumed it was encephalitis again (although it isn’t really possible) and that I had a bad immune system.¬†The only thing that he did was change medication again. Prescribing me a new anti-epileptic for seizures that I never had.

This is also when the Viking and I started seeing each other again. Lying in my hospital bed I realised the only person that I wanted to see was him. I asked him to visit me. He came and that was it for us. We have been together for over 2 years and he has been the biggest blessing and happiness in my life. I am thankful every day for the way that he loves and cares for me Рthe sick girl.

After being discharged from hospital I spent perhaps a week at home before returning to work. I wasn’t ready and in addition I was having a severe reaction to the new anti-epileptic that Dr. M prescribed. So back to hospital I went AGAIN! Fortunately it was only for a few days. And one of the godsends was Dr. W the psychologist who was still treating me.

At this point it was agreed between myself, my doctors and my employer that I would take an indefinite period of time off work to recover. I was placed on unpaid medical leave and my employer re-applied to our insurer for medical disability so that I can receive a disability salary during this period. This would turn out to be a long and frustrating process and also the start of my worst financial nightmare. During 2012 I had already experienced periods without a salary as a result of gaps between my unpaid medical leave and my disability salary from my insurer. As a result I accumulated debt that I had not yet settled when I was placed on unpaid medical leave again. The miraculous plus is that in early April I decided to sell my car Рa definite indulgence Рand buy a car that was worth half of the previous one. I had a feeling that I may need the extra money Рand my goodness was I right!

What I didn’t know at the start of my medical leave was that it would be 2 years before I would return to work again.

Since I had the Viking in my life I decided to spend more time in my own home recovering as opposed to with my Mom. I would still go to my Mom often – even during the week – because I had the freedom to do so and loved spending time with her. I also didn’t want her to get too lonely – something that has remained a concern since my Dad passed away.

I was trying to recover and also getting used to spending so much time on my own without work to keep me busy. I am embarrassed to say that I watched a lot TLC channel with Toddlers and Tiaras.¬†A low point yes! ūüôā

My recovery didn’t go as well as I hoped. I was resting and taking care of myself – hoping to get 100% health again. (Ha Ha! That would never happen of course.) I unfortunately¬†continued to deteriorate and by mid July found myself in a position again where I had to go see a doctor. Because I couldn’t get an appointment with Dr. P (the Wonderful!) in April I assumed that it would be the same this time around. And back I went to Dr. M again. He was the sweetest man, which is one of the reasons I kept going back. Yet I knew the care I was receiving¬† was far from optimal.

This would however be a major turning point for me and I will continue the story in Part 6.

Xo

When I last wrote about my diagnosis story we were in August 2012 where I was sick yet again and headed back to hospital for 3rd time.

Over and above the normal symptoms I realized it was time to get back to hospital when I couldn’t reverse my car out of a normal parking spot. ūüė≥ And this at the motor dealership in front of everyone – and I went over a traffic cone! I was mortified and terrified.

My time in hospital felt all to familiar. I continued to feel dreadful with alternating weakness, headaches and confusion. I also suspected Dr. M was over medicating me and that viral encephalitis wasn’t the correct diagnosis. I don’t even think that a lumbar puncture was done this time.

Dr. M did various blood tests but nothing showed up. He reluctantly referred me to a specialist who I would like to refer to as Dr. ‘OMG I blessed you with my presence when I have no time for you.’ I didn’t like him in case you haven’t noticed.

Dr. OMG flapped into my room with curtains flying – nearly gave me a heart attack! He did a high level autoimmune indicator that was negative. He didn’t do any other autoimmune tests such as ANA indicators. He concluded that I was over medicated and stressed. He was right about the over medication. And yes of course I was stressed, but that was not the root cause!

I wanted to jump out of my bed and strangle him! Stress is not a diagnosis and in my experience means that a doctor has no idea what is wrong and no intention of finding out.

I went home to my Mother with a bag full of medication to continue my recovery, but I got worse by the day.

I was constantly nauseated and couldn’t stomach eating or drinking anything other than water, Cream Soda, yogurt, fruit and plain omelette. I couldn’t even open the fridge, because the food smell would make me instantly nauseous. My poor Mom had to eat each meal alone. ūüėĒ

To make things worst I was sleeping all day Рonly able to wake for meals and a bath.  And when I was awake I was tired and confused. I felt like I was in one of those movies where you are held against your will in a psychiatric ward of a hospital Рdrugged, unfocused and floating along a corridor looking like one of the characters from Girl Interrupted.

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And I did look horrible – as a result of all of this I weighed 48 Kgs which is problematic for my length of 1,72 M. Mom was very worried and I only had half a clue. She decided to take me to my childhood GP who is an excellent doctor and not Dr. M.

My GP was equally concerned and ran liver function tests. The results were dreadful and not because I was a drinker to quote him! ūüėä It was because of my medication and one culprit Topomax was also responsible for my constant drugged feeling. I went off Topomax and one or two other medications and soon started feeling better. ūüėĄ I wowed not to see Dr. M again.

I took a long time to recover and only returned to work in November on a part time basis. I was happy and healthier –¬†¬†still struggling with headaches, weakness and general body pain. ¬†On a good note this is when I stature to get to know the Viking better after briefly meeting him in August. ūüíõūüíõūüíõ

I decided to seek a second opinion about my health and got an appointment with a highly regarded neurologist Dr. H. He reviewed my case and also repeated his own blood tests and EEGs.

His words to me were powerful ‘I don’t know where this doctor studied medicine, but when I was in university this is certainly not how you diagnose encephalitis.’ ¬†I never had encephalitis – your EEGs were normal and more important your CSF tests were also normal.

I was horrified! ¬†It confirmed my worst fear! I had been treated for something I didn’t have – poisoned and a whole year of my life wasted. ¬†What was wrong? He didn’teknow – it was probably stress. ūüė≥ He ruined it!

I left feeling dejected , but hopeful that I won’t get ill again. 2013 would prove me wrong.

Xo