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 there,
I read with your post with interest because I have similar symptoms and a similar lack of answers.
I was diagnosed with HSP in 2014, but I have no family history, and my (quite extensive) genetic testing has thus far come back negative. I had similar presenting symptoms - spasticity, hyperreflexia, clonus, balance issues, couldn't walk on heels.
Then the symptoms spread into my upper limbs and my hands started to atrophy and claw. Several HSP docs then said, no way do I have HSP, but they couldn't give me another answer. I have the same fears and concerns about this actually being a slow moving form of ALS instead.
My feet look just like yours, turned in, big toe simultaneously flexing and extending. High arches that are getting higher from the muscles pulling (have lost a whole shoe size).
Sorry I don't have any more useful information to tell you or suggest, but I wanted to chime and say that I understand what you are experiencing. I know it is scary to be young and dealing with stuff that no one has any clue about.
Take care,
Suzannah
I read with your post with interest because I have similar symptoms and a similar lack of answers.
I was diagnosed with HSP in 2014, but I have no family history, and my (quite extensive) genetic testing has thus far come back negative. I had similar presenting symptoms - spasticity, hyperreflexia, clonus, balance issues, couldn't walk on heels.
Then the symptoms spread into my upper limbs and my hands started to atrophy and claw. Several HSP docs then said, no way do I have HSP, but they couldn't give me another answer. I have the same fears and concerns about this actually being a slow moving form of ALS instead.
My feet look just like yours, turned in, big toe simultaneously flexing and extending. High arches that are getting higher from the muscles pulling (have lost a whole shoe size).
Sorry I don't have any more useful information to tell you or suggest, but I wanted to chime and say that I understand what you are experiencing. I know it is scary to be young and dealing with stuff that no one has any clue about.
Take care,
Suzannah
