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,
Well, as my title suggests, I'm headed back to the National Institutes of Health tomorrow in Washington, DC. As many of you know, I was originally diagnosed with the upper motor neuron disorder, hereditary spastic paraplegia, but a change in symptoms, no family history, and ambiguous genetic tests results have made it seem likely that HSP is not the correct diagnosis. However, no one can quite seen to give me an answer since I have an unusual combination of symptoms. Most of my symptoms are related to hypertonicity, but my hands are now becoming very weak and atrophied (not a general symptom of HSP) and no one can tell me why.
Since 2014, I have been to Austin, Houston, San Antonio, Seattle, Ann Arbor, and now for the second time, DC, in search of answers. When I was at the NIH the last time, it was for an HSP study; this time I will be meeting with the movement disorder department. I am very curious as to what they have to say.
Practically speaking, I'm not sure it matters ask that much what I have because none of it is likely fixable anyway. But I still want to know, so I can have at least some sense of what is coming.
Thanks for listening.
Suzannah
Well, as my title suggests, I'm headed back to the National Institutes of Health tomorrow in Washington, DC. As many of you know, I was originally diagnosed with the upper motor neuron disorder, hereditary spastic paraplegia, but a change in symptoms, no family history, and ambiguous genetic tests results have made it seem likely that HSP is not the correct diagnosis. However, no one can quite seen to give me an answer since I have an unusual combination of symptoms. Most of my symptoms are related to hypertonicity, but my hands are now becoming very weak and atrophied (not a general symptom of HSP) and no one can tell me why.
Since 2014, I have been to Austin, Houston, San Antonio, Seattle, Ann Arbor, and now for the second time, DC, in search of answers. When I was at the NIH the last time, it was for an HSP study; this time I will be meeting with the movement disorder department. I am very curious as to what they have to say.
Practically speaking, I'm not sure it matters ask that much what I have because none of it is likely fixable anyway. But I still want to know, so I can have at least some sense of what is coming.
Thanks for listening.
Suzannah