[sandy56]

Had my follow up with Dr Franklin today. He says I am doing well and has approved my Italy trip. I leave Friday.

When I get back he will start tapering me off prednisone. I have been able to reduce my mestinon as well. He has also recommended a baseline pulmonary function test.

I am feeling so much better overall. I still have ocular symptoms daily but much less weakness elsewhere. YAY!! Hope this phase stays a while.

Thanks for all the encouragement gang!
Sandy

[crayolagal]

Great news....enjoy your trip!!!

[Fortunatos]

Originally Posted by sandy56

Had my follow up with Dr Franklin today. He says I am doing well and has approved my Italy trip. I leave Friday.

When I get back he will start tapering me off prednisone. I have been able to reduce my mestinon as well. He has also recommended a baseline pulmonary function test.

I am feeling so much better overall. I still have ocular symptoms daily but much less weakness elsewhere. YAY!! Hope this phase stays a while.

Thanks for all the encouragement gang!
Sandy

Well that is fantastic! Enjoy and send us a "postcard"...

[edwinlgreen]

Sandy, I wanted to give you feedback for 2 reasons. First I live close to you and I am so far satisfied with my Neurologist, Second I see parallels to our situations.
My Neurologist is Dr Asad at Baptist Medical Neurology in Jacksonville. They have several locations and I think 4 Neurologists at their main office in downtown Jacksonville. Baptist medical itself just opened an emergency room and medical clinic in Fleming Island. It would be about 30 minutes closer to you than downtown. I can do some of my tests there. I have a chest cat scan scheduled there tomorrow but have to go to Jacksonville locations for my sleep study and nerve conduction. Since it is just 2 blocks from me that is a big deal. I believe more will be coming to the center, maybe even to the point of becoming a full fledged hospital. On my visit to Dr Asad, I had already tested positive on the blood test so I had a diagnosis. He spent about 45 minutes with me, he conducted physical tests. Touch my finger, walk a straight line, push my hands apart- together look up for 5 minutes and other tests. I believe I did fairly well on the strength test, marginal on the stability. I had been having pretty much 24x7 double vision for a couple of weeks and the Ptosis was bad if I tried to drive. I had stopped driving.

He prescribed Mestinon 60mgx2 with an option of going to 3 times a day and 80 MG of Predisone. Since I have had no breathing issues just marginal strength issues I believe the dose is in line with the following website. http://www.medscape.com/viewarticle/482695_3 .

I started the Mestinon first and it had almost no effect. I started the Pred 2 days later and almost immediately had significant positive effects. That is just the opposite of what I expected. On the first day I saw about a 70% improvement. Now on day 4 I have just occasionally double vision. I do some limited driving and feel that if I did more the Ptosis will be a concern. I am still waiting to see what side effects will happen and what will happen when I start reducing the pred (I am to go to 60 MG after 2 weeks and 40 2 weeks after that.

The similiarities of our situation are this.
The strong symptoms started about the same time we both appear to have some positive results much earlier than some.
We both had personal crisis before the symptoms started. You with your parents, me with my Grandson.
MG is a very bad disease but I don't know of anything that compares with late infantile medocramtic leukodystrophy. It is very rare occurring in only about 1 in 400,000 births. the Symptoms start usually at about 2 and 1.2 years of age. It is even harder to diagnose than MG. From the day of diagnosis there is no hope. It is considered terminal from day1. Without treatment death is expected by the age of 5 after losing the ability to walk and talk. Deafness and blindness and eventually a comostose condition is expected before death. The only treatment is a stem cell to bone marrow transplant and it is not usually offered to patients that are not diagnosed pre symptomatic which almost always means the patient is a sibling of this hereditary disease. If a child has it there is a 1 in 4 chance of a sibling having it as well.
Treatment can halt the progression of the disease after a period of rapidly speeding up its progress. It may extend life by 5 years or so and add some quality of life to those 5 years. Duke accepted Henry in spite of the fact that he was symptomatic. I believe that the fact my Son and his family live in Raleigh just 30 miles away was a factor. He was diagnosed in January, spent 5 months undergoing the transplant, and died from complications in December. It was a terrible year and I was there for it all.
His family had a lot of support. Their insurance company has a research agreement with Duke that paid the 2 million plus expenses instead of limiting it to their 500k max for transplants. They got the week at Disney from Make a Wish before treatment was started. There has been much support from friends and family and from their companies but it has still been a devastating experience.
http://www.caringbridge.org/visit/henrygreen/guestbook is his web site.
If you look at me on the bottom row of page 3 ln the picture section on the web site holding Henry you can see that I already had symptoms of Ptosis. I was not aware of it until just over 2 months ago and that was over a year ago.
I apologize for carrying on for so long. I believe I just needed to vent. I apologize for using my new friends on the MG board for this.

[Fortunatos]

Edwin, We are all in this together. We are your friends; your MG family! I'm glad you're here....

Oh, what a beautiful, BEAUTIFUL, little boy....!

[sandy56]

Edwin

I was very moved by your story. I am so sorry for your loss. Thank you for sharing with us. Please remember you can unburden yourself here anytime. Stress and loss are so hard on the body. Please let us know if we can help in any way.
Sandy