I was diagnosed with Pick's/FTLD in February. My doctor who a specialist in FTD told me that I may have been having symptoms as far back as 5 years. But I do not have the typical acting out, personality changes that is always described with FTD. My doctor has told me that she can't really tell me more until when or if we find out what varients I have. I haven't been able to see her much because we have lived far away from that clinic.
Another doctor who has FTD research told me I cannot have it because I don't have the "acting out" symptoms despite clear proof on an MRI and extensive neuro psych eval. I do have many other symptoms c/w FTD and some of them supposedly occur in the middle stages so I don't understand why if the "acting out" and lack of insight into the disease must be present then how I am able to clearly have FTD without those symptoms. I have many other symptoms of FTD and some of them according to what I have read would put me into the middle stages of FTD.
If you know of any research regarding varients of FTD that might explain the different progression of symptoms in myself and a few others I have met please let me know.
Our brains are wonderful, complex things. While it may be frustrating to you not to know exactly what is happening in your brain, you may want to give some thought to focusing on your abilities, rather than what should be happening to you negatively. It sounds like you are blessed with fewer symptoms than most who share your diagnosis - that's a wonderful thing. Look for ways to enjoy life and live fully today!
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