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

This is an interesting article via Lunatic Laboratories about the use of our own stem cells to treat in this case Muscular Dystrophy a degenerative muscle disease.

Similar research is being done for Myasthenia Gravis with great success.

Are stem cell transplants our future?

XO❄️💙

Satellite cells are stem cells found in skeletal muscles. While transplantation of such muscle stem cells can be a potent therapy for degenerative muscle diseases such as Duchenne muscular dystrophy, these cells tend to lose their transplantation efficiency when cultured in vitro.

via New method to grow and transplant muscle stem cells holds promise for treatment of MD — Lunatic Laboratories

Every year in June there is a targeted effort by the myasthenia gravis community to spread awareness about this rare disease. There are however many people and communities that strive to do this every day.

In order to do my part and to spread more awareness I have created a Facebook page ‘Myasthenia Gravis – Red and the Big Bad Wolf.’ It would mean the world to me if you would like my page and help to spread awareness. You never know who it might reach and more importantly help. Especially those that have not been diagnosed, have been wrongly diagnosed, or struggling with mysterious and debilitating symptoms.

You can find my Facebook page at https://www.facebook.com/redandthebigbadwolf/ You can also follow me on Twitter on @ItsRedRidingH.

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You can search for the following hashtag #IhaveheardofMG on Twitter in order to read and share tweets about myasthenia gravis. Do follow the wonderful creator of the #IhaveheardofMG campaign on Twitter on @ihaveheardofmg.

I also suggest that you follow the inspiration behind ‘Myasthenia Gravis Unmasked’ on Twitter on @RebekahDorr or on Facebook on https://www.facebook.com/mgunmasked/

Then there is my biggest inspiration and snowflake shoulder to lean on. Someone that I am honored to call my friend that you must follow on Facebook  – Retha. You can find her on https://www.facebook.com/chronicallytwentysomething/

I will leave you with a brief explanation of myasthenia gravis (MG) and its primary symptoms. ‘Myasthenia gravis (pronounced My-as-theen-ee-a Grav-us) comes from the Greek and Latin words meaning “grave muscular weakness.” The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups.’ (Courtesy of the Myasthenia Gravis Foundation of America http://www.myasthenia.org/) The most common symptoms of myasthenia gravis are:

  • A drooping eyelid
  • Blurred or double vision
  • Slurred speech
  • Difficulty chewing and swallowing
  • Weakness in the arms and legs
  • Chronic muscle fatigue
  • Difficulty breathing

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Wishing you good health and happiness. XO

I ended off my last blog post in April / May of 2014, where I finally had a diagnosis! Lupus! I was so happy to finally have an answer to ‘What is wrong with me?” after 2 and half years of illness! (This would turn out not to be the Eureka diagnosis I expected. :() Now lupus isn’t a happy diagnosis – no autoimmune disease is – but it was something. We could name it and we could treat it and I continued on the immunosuppressants (Imuran) and cortisone (Prednisone) per instruction from my specialist physician Dr. K.

I even started my blog 🙂 Red and the Big Bad Wolf – with the name inspired by the origin and name of the disease Lupus. I joined Lupus support groups and I finally felt a sense of belonging. I no longer had a mystery disease. People could no longer doubt my illness and whether it was all psychosomatic.

I felt slightly better on the new medication, but far from good. I also struggled with constant nausea as a result of the immunosuppressants. We increased the dosage to see if my condition would improve, but after a two months it became unbearable and I couldn’t even eat – so we reduced the dosage again. I would come to realize over the years that my body is very sensitive in terms of the impact of certain medications; and I would often struggle with severe side-effects.

I still struggled with severe fatigue, general weakness in my body and limbs and pain. It was odd as I should have been improving on the treatment. And this did have Dr. K. and my neurologist Dr. P. (the Wonderful) scratching their heads.

I saw Dr. P. (the Wonderful) in July of 2014 for a follow-up. While we were talking she kept staring at me and then suddenly said –  ‘I have seen you looking tired and with bags under your eyes, but I have never seen your like eyes this. They look like they are drooping.’ She came over for a closer look and asked me if I had noticed this before. I said that I had actually noticed it on photos and even showed it to the Viking, but  he said I was imagining things and I thought so too.

Dr. P. (the Wonderful) looked at me with a big smile on her face and said ‘I know what is wrong with you! You have myasthenia gravis!’ This was the EUREKA moment of my diagnosis journey ! Of course I had no idea what myasthenia gravis was, couldn’t pronounce it, never mind spell it! 🙂 Dr. P. (the Wonderful) briefly explained what myasthenia gravis (or MG for short) was and wrote the name down so that I can also read up on it. She also said that we had to do a few tests to confirm the diagnosis – blood tests and an EMG test. Although the EMG test confirmed it the blood test didn’t, but she was still positive that I had myasthenia gravis.(This is a topic that I will cover in a separate blog post as testing for antibodies to confirm a MG diagnosis is not straight forward.)

Myasthenia gravis as a diagnosis made perfect sense and also explained why I wasn’t improving based on the treatment I was receiving for lupus. (Although it was a bit of a downer that I had both diseases – it is rare and troublesome.)

Like lupus, myasthenia gravis (MG) is an autoimmune disease, but it is very different. ‘Myasthenia gravis (pronounced My-as-theen-ee-a Grav-us) comes from the Greek and Latin words meaning “grave muscular weakness.” The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups.’ (Courtesy of the Myasthenia Gravis Foundation of America http://www.myasthenia.org/) The most common symptoms of myasthenia gravis are:

 

  • A drooping eyelid
  • Blurred or double vision
  • Slurred speech
  • Difficulty chewing and swallowing
  • Weakness in the arms and legs
  • Chronic muscle fatigue
  • Difficulty breathing

 

As you can see from above the symptoms in bold already ticked quite a few boxes for me. Over time all of the symptoms would be come applicable to me. 😦

The following paragraph provides a detailed description of what myasthenia gravis is and how it works. You can skip this if you are not into long medical descriptions! 😉 (Ps. I still cannot properly pronouce ‘acetylcholin’ :))

‘The voluntary muscles of the entire body are controlled by nerve impulses that arise in the brain. These nerve impulses travel down the nerves to the place where the nerves meet the muscle fibers. Nerve fibers do not actually connect with muscle fibers. There is a space between the nerve ending and muscle fiber; this space is called the neuromuscular junction. When the nerve impulse originating in the brain arrives at the nerve ending, it releases a chemical called acetylcholine. Acetylcholine travels across the space to the muscle fiber side of the neuromuscular junction where it attaches to many receptor sites. The muscle contracts when enough of the receptor sites have been activated by the acetylcholine. In MG, there can be as much as an 80% reduction in the number of these receptor sites. The reduction in the number of receptor sites is caused by an antibody that destroys or blocks the receptor site. Antibodies are proteins that play an important role in the immune system. They are normally directed at foreign proteins called antigens that attack the body. Such foreign proteins include bacteria and viruses. Antibodies help the body to protect itself from these foreign proteins. For reasons not well understood, the immune system of the person with MG makes antibodies against the receptor sites of the neuromuscular junction. Abnormal antibodies can be measured in the blood of many people with MG. The antibodies destroy the receptor sites more rapidly than the body can replace them.'(Courtesy of the Myasthenia Gravis Foundation of America http://www.myasthenia.org/)

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I will continue in my next blog post with my treatment plan for myasthenia gravis and also more surprise diagnosis’. ‘Sigh.’ It never ends.

XO

 

 

 

 

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