Update and hip weakness

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mummy24

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Jan 29, 2012
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Learn about ALS
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Hi all, not been on here for a while as had a lot on my mind! If you see my previous post a few months back on the als forum, that thread is now closed.

Still trying to get help for ongoing neuro symptoms- see previous threads.

Have been trying to get on with my life although the discomfort is slowly getting worse. If I am on my feet all day, it takes me two days to recover due to tightness and cramping.

I have tried to speak to my gp about it but she has not listened to me at all. She just gave me the number for a general helpline but they said due to the nature of my condition they cannot help as I need a specialist. As I don't have a firm diagnosis the gp seems to be a bit unhelpful...although I have had all my symptoms confirmed by many doctors, just unable to find a diagnosis. I have sought out a physical therapy privately...

My physical therapist is great! He is extremely helpful and assessed me. He said that my progressing problems certainly seemed to be caused by my usual spasticity and weakness. Was surprised as he has said I definately have weakness in my hip muscles ( worst in my left hip.), I had no idea about this but I guess it makes sense as I have had issues with climbing stairs lately.

I have been given stretches and excerises to help but finding it hard going as my muscles cramp up badly...will keep on doing it though if it helps.

Is hip weakness the norm with these upper motor neuron disorders?
 
Mod note- Moved to DIHALS. Please continue posting here.
 
mummy24, have you been seen my a neurologist?
 
Hi Mummy- I went back through your posts. You've been looking for a long time. (For others: Mummy has been struggling with a UMN issue for over 4 years and has shown signs of neuromuscular and peripheral nerve stuff of unknown source.)

Physios are fantastic for help. A neuro trained one can be a total quality of life saviour and help with keeping mobility and flexibility. I am glad you have found one.

I am sorry you have yet to find a source for your symptoms.
 
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