dancergymnast
Member
- Joined
- Jun 2, 2016
- Messages
- 11
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2016
- Country
- ESP
- State
- Cantabria
- City
- Santander
Good morning! (or Good night, depending on where in the world you are )
I feel like I am finally getting somewhere in my diagnostic journey. I have "changed" my health care to a different region of Spain and after an appointment in general neurology, have been derived to the neuromuscular team. I am waiting for the appointment date, so I'm hoping in January/February I'll be able to go back there to finally see a team who MAYBE has seen UMND before. I've prepared a list of US doctors that I have found through this forum who have diagnosed your cases of PLS, in case I continue having trouble. Trying to be as proactive as possible so they will stop trying to say it's psychological (I now have THREE opinions from three different psychiatrists that say I don't have any psychological problem, and according to the last one I saw, it seems I'm not the only one locally to have been sent there by an incompetent neurology team...).
I do have another question about symptoms. As I currently go months without contact with a neurologist (or any other pertinent doctor for that matter), I'm not sure what to do about symptom progression. In the last few weeks, I have been falling every time I get out of bed in the morning. Once my legs "find themselves" I'm able to get around slowly unassisted. But the first few hours in the morning are slow and difficult, especially the mornings when I walk to work (I have a rotating class schedule and some weeks I don't have to work in the AM). My( gait has also altered just in the last week; I was already shuffling my feet since my ankles don't move either up or down, but now my stride is also very short. It's like I can't extend my legs out to walk with a longer stride. Also, my left knee doesn't completely straighten out, adding another little hitch in my stride. My legs tire out much faster than they used to walking in this way.
So, my question is, at what point did you start using assistive devices, such as leg braces (AFOs?) and canes? Or has anyone had the same stride progression and found anything to help with it, like some new way to walk or anything really? Did you learn anything interesting in physical therapy sessions that helped you compensate with your stride and not tire you out so much? Call me vain, but I'd rather not call any more attention to myself in the street with a cane or the like- I already stick out like a sore thumb with my blinding white Irish-American skin. I'd rather not be the ghostly looking foreigner with obvious weird leg problems.
I feel like I am finally getting somewhere in my diagnostic journey. I have "changed" my health care to a different region of Spain and after an appointment in general neurology, have been derived to the neuromuscular team. I am waiting for the appointment date, so I'm hoping in January/February I'll be able to go back there to finally see a team who MAYBE has seen UMND before. I've prepared a list of US doctors that I have found through this forum who have diagnosed your cases of PLS, in case I continue having trouble. Trying to be as proactive as possible so they will stop trying to say it's psychological (I now have THREE opinions from three different psychiatrists that say I don't have any psychological problem, and according to the last one I saw, it seems I'm not the only one locally to have been sent there by an incompetent neurology team...).
I do have another question about symptoms. As I currently go months without contact with a neurologist (or any other pertinent doctor for that matter), I'm not sure what to do about symptom progression. In the last few weeks, I have been falling every time I get out of bed in the morning. Once my legs "find themselves" I'm able to get around slowly unassisted. But the first few hours in the morning are slow and difficult, especially the mornings when I walk to work (I have a rotating class schedule and some weeks I don't have to work in the AM). My( gait has also altered just in the last week; I was already shuffling my feet since my ankles don't move either up or down, but now my stride is also very short. It's like I can't extend my legs out to walk with a longer stride. Also, my left knee doesn't completely straighten out, adding another little hitch in my stride. My legs tire out much faster than they used to walking in this way.
So, my question is, at what point did you start using assistive devices, such as leg braces (AFOs?) and canes? Or has anyone had the same stride progression and found anything to help with it, like some new way to walk or anything really? Did you learn anything interesting in physical therapy sessions that helped you compensate with your stride and not tire you out so much? Call me vain, but I'd rather not call any more attention to myself in the street with a cane or the like- I already stick out like a sore thumb with my blinding white Irish-American skin. I'd rather not be the ghostly looking foreigner with obvious weird leg problems.