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1 Week after the first Prolozone Injection

It’s been a week since Robert had his first Prolozone Injection.  The pain level is about a 7 – 9 when he wakes up in the morning and a 5 – 6 during the day.  He doesn’t feel it’s any different than before he had the injections.  The first few days he said he could feel a difference but now says it’s the same.  The next injections are next Saturday the 31st.  I hope there is some improvement after the next set of injections.  I knew this wouldn’t be a miracle but I was hopeful that Robert would get some relief from the constant pain.

Brian is having a Spinal Tap to confirm MS!

Brian has had so much eye pain these last few years that the Doctors in Miami ordered an MRI to see what was going on.   It took eight months for all the insurance and doctors to authorize it but he had the first MRI  March 26th then another one April 2 and then an MRI on his spine on April 13th.  His neuro opthomologist suspects MS.  Today we are at Seattle Radiologolgy getting a spinal tap.  We’ll have to wait 10 – 14 days for the results.  Does anyone else with LHON have MS? 

Brian and the stress of life with LHON

Brian has had a couple of pretty stressful months at work and the longer he tries to hold on to this job, the more stressed he gets.  He hasn’t had one of his life stopping headaches in two months and he’s had no improvement in his vision in the last two months.  Monday he came home from work with a headache that put him in bed for 2 days and he was actually happy about it, he relates the intense, severe migraines to getting back more vision.  We don’t know if there is anything to this, but the more severe the headaches, the more vision he has recovered.  Most people laugh at this but it has been his experience.  The Doctors in Miami want him to have an MRI as these headaches aren’t normal to LHON.  When they tell you LHON is painless, who with LHON can agree with that?  I have seen my son go through the most painful eight years, which has caused me extreme pain and grief.  I still feel responsible, but I didn’t know.

On the other side of things, Brian has enjoyed his summer, went out more with friends and is trying really hard to live a normal life.  He is taking the bus to places he wants to go and that is a huge improvement.  The stress he has been feeling is from his job and trying to work in an environment that isn’t really set up for him.  One of his best friends from High School helped him get the job and is working on creating another job just for Brian that will be far better suited for him.

My daughter is having her first baby in a couple of weeks, it is a boy!  She tested for the LHON mutation before she got married and has the same mutation as Brian.   We are hopeful that with the research and knowledge that we now have that LHON won’t be a problem in the next generation.