Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

Noreen, did your husbsnd ever take dilantin for seizures?

Hi. Based on a couple MRI's, I have severe cerebellar atrophy related to an undetermined disease. My balance and coordination were less a year or so ago. I have been told and have read this condition is incurable and only the symptoms are treatable. I have tried everything I am aware of to slow the progression or make this go away. I am currently seeing a natural healing specialist and feel as this is helping, along with brain restore medication. I also have a speech impairment (dysarthria) and very vivid (I believe they are real at the time) dreams and have had hallucinations, along with wide gait and breathing problems (currently on oxygen). My prayers go to all involved in this terrible condition.

Welcome to Connect, @dkeg. We're glad you found this discussion group. In addition to @howardjames (Noreen) who's husband has Cerebral Atrophy and @lisapraska who's young son is living with it, I'd like to introduce you to @pec2884 (Liz) who lives with cerebellar atrophy. You can read more conversations between Liz and Noreen here:

- Cerebellum Brain Atrophy https://connect.mayoclinic.org/discussion/cerebellum-atrophy/

DKeg, the dreams and hallucinations must be troubling. How do they affect you and how to you cope with that?

Just got a call today from geonomics dept., will hear results on large panel on November 6th, why such a long wait?

@hopeful33250, my son's geonomic results are in from his Large panel testing we have to go back to the Mayo for the results on November 6th, why is there such a long wait? I think the wait is intense and very stressful. Also I was told before the large panel came back, if the results are not good we would be called back to the clinic for the results. This is a very stressful time for our family.

Hello Lisa @lisapraska

I can only imagine what a difficult time this must be for you and your family. I cannot answer the question as to why the wait is so long. Have you spoke with the department that does the genomic testing? Perhaps they can provide you some reason for the long wait.

I'm going to invite, @colleenyoung, into this discussion as well. Perhaps she can shed some light on this.

Teresa

Hi Lisa,
I'd like to bring @fernandavidigal and @jennsprung into this discussion. They each have a child with rare genetic disorders and have had genomic testing done. They will certainly be able to relate to the stress of waiting for results, and may be able to shed some light on how long they had to wait and how they coped. You might like to read more about these discussions to connect with other parents of children with special needs.
https://connect.mayoclinic.org/discussion/anyone-with-keutel-syndrome/
https://connect.mayoclinic.org/discussion/mother-of-special-need-children-losing-her-mind/

@howardjames , Hi Noreen it's Lisa Praska, my son who is 5 has cerebellar atrophy, we go back to the Mayo on Nov 6th for his genomic large panel results, he was just in for his yearly eye exam and his vision has gotten quite a bit worse, is this to be expected ?
Sincerely,
Lisa Praska

Hi Lisa,
I'm sorry to hear that your son's vision has gotten quite a bit worse. I'm also tagging @pec2884. Liz, has your eye sight been affected as a result of Multiple System Atrophy?

Lisa, I'm thinking of you as you get through the final stretch of waiting for Nov 6.