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I am thankful that Alf is stable Myasthenia Gravis – Alf Smulders

Living with Myasthenia Gravis in your Seventies

As with Most People, Alf’s Road with MG spans many years before diagnosis and treatment. There seems to be a few common factors that sufferers have Pre Onset of MG. Alf had a few, His family has a history of #AutoimmuneDisease and in his 30’s He was poisoned with Triisocynate and nearly died. At 65 He had a serious motorbike Accident that in hind sight kick started his MG. Although He had no broken legs his legs could not support him. He also had regular choking incidents. It took about 6 months for him to recover. Over the next 4 years he regularly had episodes of feeling really weak and recovering after a few days in bed.

We always put it down to getting the flu. The need to rest after a day at work also started becoming a norm. After a Sunday bike ride he would crash for about an hour to recover. At 70, In 2012 He started having issues with his balance, and he started to loose his eye sight. he was admitted for possible stroke after been in bed a few days due to feeling weak . One day when I came home mid day to check on him he was unable to get out of bed, His eyes were droopy and he couldn’t speak clearly. We did all the regular scans to check traces of stroke but they all came back clear. After a day of having been to hospital he recovered quickly that he was discharged with no Answers of what was really wrong with him.

When then went to see an ENT Specialist for his balancing issues but we still got no answers, an eye specialist just prescribed stronger lenses for his glasses. Over the following months his eye got worse.He stopped driving unless it was absolutely necessary. His balance was terrible and he got more fatigued during the day. By March 2013, In order for him to see he had to put his head back, His eyes couldn’t stay opened. At a visit to our optometrist for another pair of glasses he picked up that something was wrong but didn’t know what it was, He then sent ALF to an eye specialist, And all we got from him was stronger lenses as he said ALF couldn’t possibly have #Stigmatism. This was on Friday, On Sunday ALF was really battling with his eyes, walking and energy, His face was looking really bad so I took a photo.

On the Monday I phoned the eye specialist insisting on getting an appointment to see him for just 5 minutes, When I showed him the photo I had taken of ALF the previous day he had the Audacity to say Alf may have blinked when I took the photo of his face. I insisted that the way his eyes and face looked had to be more than just STIGMATISM. Under duress he said okay I will test him for MG. On our way back from the blood tests we bumped into the physician who had checked him the previous year when he was in hospital, When I showed him him the picture I took the previous day he just said that is most definitely Myasthenia Gravis.

This Led us to a Neurologist who did scans that showed that Alf had #THYNOMA. He was put into a high dose of predison and imuran. He wanted ALF to recoverabit before doing the THYMECTOMY. My only source of reference was the internet, I read as much as possible, As the Neuro was not very forthcoming with what to expect in the near future. In June he had a full sternum THYMECTOMY. It took him a couple of months to recover to a point were he was having more good days than bad. By the end of the year He was riding his motorcycle again, although we did change it for smaller lighter model. Unfortunately in Feb 2014 He was knocked off his bike and broe his femur. The stress of this accident agraveated his MG. His physician started to reduce his predisone dose as he was worried He had been on a high dose for too long and the bone wouldn’t heal. It was around this that I joined the support group and finally learnt the real facts about MG.

Our Original Neurologist really left out all the important bits. The next year was very slow recovery from the accident and fairly stressful year Business wise. Alf never got back to the pre accident stability with his MG. His eye sight really took a knock with cataracts forming on both eyes. He had OP’s on both eyes during 2015 and 2016.

He was still battling with keeping them open and general fatigue with his legs giving him the most trouble. He was never put onto Mestinon when he was diagnosed and after learning a lot the side effects of it we never saw it as an option. In September 2016 I started him on huperzine A, It has made a huge difference. He has started to drive again and able to get through most days, though he still has his bad days and is unable to do all the things he knew how to we have learnt how to live with MG. We know what his triggers are and we avoid them as much as possible. We are back on a more keel with MG and hope we can actually maintain this. For all the newbies outhere, As a caregiver I cannot stress enough how important it is to be educated in all aspects of MG. Don’t just take the Dr’s word for it. I am thankful that Alf is stable by comparison to other snowflakes, Long May it last.

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