Should I see a genetic counselor if I am worried about CJD?

Tricia See, genetic counselor at UCSF's Memory and Aging Center, discusses the value and potential of genetic counseling and genetic testing.

Category:

Education

Tags:

• CJD
• genetic testing
• counseling
• cjd
• prion
• creutzfeld

[BreakerOfBoxes]

I am currently experiencing symptoms that have just started to get more extreme at the end of a 2+ year period of dealing with these symptoms. I'm currently trying to find out of if I have CJD as the symptoms speed up. I'm quite scared that I have either CJD or CLN4 (Kuf's Disease). How do you distinguish vCJD from Sporadic CJD?

[UCSFMemoryandAging]

@BreakerOfBoxes I'm sorry to hear about your health difficulties. If your symptoms have been going on for this long, it is unlikely that you have CJD, but there may be another explanation. But if you are concerned, you should get evaluated by a physician, and if needed based on your evaluation, referred to a neurologist. You might find this web page that describes the types of CJD and prion disease helpful memory.ucsf.edu/cjd/overview/i­ntro/forms/multiple.

[Infinitesimalism]

@UCSFMemoryandAging I'm slowly starting to rule out CJD, I even sent what was leftover from my CSF to the National Prion Center and my tau protein level came back negative. I've seen many neurologists thus far, been to a Johns Hopkins related practice, and now am scheduled to go to the Mayo Clinic sometime this year. Thank you for your help, and after learning about this disease, I hope Dr. Geschwind and associates can put a stop to prions one day once and for all.