Suzannah
Distinguished member
- Joined
- Mar 19, 2014
- Messages
- 132
- Reason
- DX MND
- Diagnosis
- 08/2014
- Country
- Uni
- State
- TEXAS
- City
- Deep in the Heart of
Hi all,
As I've mentioned here before, I've been trying to pin down a definitive diagnosis for the past two years or so. I was diagnosed with hereditary spastic paraplegia at Houston Methodist, but I don't have a family history or clear genetic evidence. My symptoms have changed a lot since then and don't entirely match up with HSP. I was at the NIH for an HSP study last month, and the research doc told me he didn't think my presentation was consistent with HSP.
In June, I briefly met Dr. John Fink at an HSP conference. He seems to be"the" guy for HSP diagnosis and research in the US. I called for an appt in July, and the earliest available appointment was in Dec. Well, it's Dec now, and my appointment is tomorrow. I have safely made it to Michigan from Texas (75 degree weather to 32 degree weather. Brrr) and am looking forward to my appointment. My mother came with me, which is nice because I usually have to deal with everything by myself.
I am super curious to find out what he has to say!
Suzannah
As I've mentioned here before, I've been trying to pin down a definitive diagnosis for the past two years or so. I was diagnosed with hereditary spastic paraplegia at Houston Methodist, but I don't have a family history or clear genetic evidence. My symptoms have changed a lot since then and don't entirely match up with HSP. I was at the NIH for an HSP study last month, and the research doc told me he didn't think my presentation was consistent with HSP.
In June, I briefly met Dr. John Fink at an HSP conference. He seems to be"the" guy for HSP diagnosis and research in the US. I called for an appt in July, and the earliest available appointment was in Dec. Well, it's Dec now, and my appointment is tomorrow. I have safely made it to Michigan from Texas (75 degree weather to 32 degree weather. Brrr) and am looking forward to my appointment. My mother came with me, which is nice because I usually have to deal with everything by myself.
I am super curious to find out what he has to say!
Suzannah