If so please contact me at let me know what your symtoms are? Ther testing me for it and try to figure things out. WAS diagnosed with Leukodstrophy. Thanks Sarina
If so please contact me at let me know what your symtoms are? Ther testing me for it and try to figure things out. WAS diagnosed with Leukodstrophy. Thanks Sarina
Hi Sarina,
My wife, Patti turned 45 on Friday and was diagnosed with Adult onset Alexanders Disease in March of this year. She her symptoms started in May of 2006.
We were at the ULF Conference last month in DeKalb, IL. Patti met another woman (AxD adult onset) in her 30's. I was great for Patti to actually meet another adult Alexanders patient.
Patti's e-mail is phastings5963@aol.com and she would love to hear from you. You both have much to discuss. Remember, you are not alone.
Take care,
Celtic60
Jack Hastings (Grey haired 48 year old in photo, Patti is the beautiful brunette)
Sarina,
I tried to send you a reply awhile ago but Jack said I must have done it wrong. Here is what I posted about my experience and I hope it helps. Please feel free to contact me if I can answer any questions you may have. Good luck in your search for a final diagnosis. Be strong and know you are never alone. This community has been a wealth of information and support. Patti
I'm a 44 year old female diagnosed in March 2008.
My symptoms were first noticed in May of 2006 when I was 43 and partaking in a 5 mileCancer walk to support a co-worker. My left leg started to drag and my first thought was MS. After resting for a time I walked back to the train as if nothing ever happened. Over the next few months my symptoms kept changing and I experienced extreme fatigue and various leg spasms and cramping. Headaches and joint pain would come and go. My balance was poor and I often felt as if my walking was staggered. It wasn't until Thanksgiving of 2006 that my fatigue and leg weakness had me slouched over and in such discomfort that I decided it was time to see the doctor as this experience had me scared. In December I saw the neurologist and had an MRI of the brain and spinal cord. Doctors stated that what they saw was something they hadn't seen before and never saw in in any of their radiology books. My MRI was sent to many different doctors and nothing was ever evident. After a long wait in fear of not knowing what it was and feeling progressively worse, In june 2007, I ended up at Mayo clinic in Rochester. I saw 6 neurologists there and came home without any answers. It was 2 days later, July 2nd 2007, that I got a call saying my 21 year old daughter had passed away and they were going to do an autopsy. I had mentioned being at Mayo the previous 2 weeks and the only thing I knew was that I had abnormal findings on my brainstem and spinal core and asked that they keep that in mind during the autopsy. About 2 hours later I received a call from the cornor stating that they found abnormalities on my daughters brain stem also. I had the tissue slides from her autopsy sent to Mayo Clinic and the pathologist confirmed Rosenthal fibers. From there they decided to do genetic testing on me and March 2008 is when I finally was diagnosed with Alexanders disease.
Sarina,
Did you ever get a diagnosis? I think of you often and really need to connect with other adults with Alexander's disease. I need to know what others are experiencing so I have an idea what to expect in my days ahead. This whole sudden onset is frightening and learning to have to be a person with a disability is a challenge in itself. I pray you got a better diagnosis and hope you are feeling as best as you can. God Bless! hang in there... Patti
Hi Sarina,
Our Son had a form of Alexanders. He was 27 when he passed. Jbergma1@sbcglobal.net
He did not have the infantile form
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