mic67
New member
- Joined
- Jul 27, 2018
- Messages
- 4
- Reason
- Learn about ALS
- Country
- Uk
- State
- East Sussex
- City
- Brighton
Good evening everybody. Gratitude in advance to anyone who reads this, or takes the time to respond.
From reading all the stickies, I seriously doubt I have ALS. My heart goes out to those that do. That said, there is so much knowledge and experience here and if possible, I would like to pick your brains.
I am not wanting to take up too much of anyones time but I have what seems to be an unusual symptom which I wondered if anyone else had experienced it.
I have what has been called by an Orthopedic Consultant 'Significant Iliopsoas weakness'.
Essentially, for six months I have been unable to lift my legs when I am lying down or reclining in a chair. (Active straight leg raise).
They wont move, I can see the thigh muscles and abs tensing but nothing lifts the legs when straight! It is like someone is sitting on them, or there are concrete blocks hanging off them. I have no pain or pull on my back muscles. As soon as I bend the knee I can move them.
Has anyone had or heard of this experience? I find very little info online on iliopsoas weakness.
I am writing this after being stuck in the NHS MSK system for 6 months where I was misdiagnosed with a herniated disc. During this time a full MRI and CT has ruled out anything in the brain and spine, other than some lumbar stenosis.
I have just been referred on to a rheumatologist which I have decided to pay for to speed things up. I am still not sure if I should be heading for neurology but the ortho consultant (after assuring me the weakness is nothing to do with my back) has sent me there first.
Clinical obs so far have been; 'Marked' Trendelenburg gait. Bilateral Trendelenburg tests. Hip Flexor weakness (MRC Grade 3). Mildly positive Rombergs test. Clonus 3 beats in both ankles. Plantars up-going on the left but down going on the right. She was unable to tip toe walk. Prioprioception in the toes was 10/10 on both sides.
Does this weakness sound familiar to anyone? I can find very little online despite searching A LOT. I am waddling, my left leg is weak and I cant walk far at the moment (I was very active until the last year or so), Does anyone have any idea as to why this severe weakness only happen when I am reclining and lying down if it is not to do with the spine or cord? I don't get it!
I have various other symptoms which I wont bore you which may be down to age (50).
I am totally baffled about this weakness and the Ortho was too. So much so that his referral to the Rheumatologist says ''Thank you for seeing this lady who has an interesting problem that I really can not work out'. I smiled at that but am anxious and frustrated with waiting - and worrying.
Also, would I have the UMN signs if this was an autoimmune/rheumy issue? I am so confused (and may be just about to waste £300 pounds on a rheumy!)
Sorry for the length of this, hope I didnt bore anyone but any experiences would be very much welcomed!
Thanks again and much respect, Michaela
From reading all the stickies, I seriously doubt I have ALS. My heart goes out to those that do. That said, there is so much knowledge and experience here and if possible, I would like to pick your brains.
I am not wanting to take up too much of anyones time but I have what seems to be an unusual symptom which I wondered if anyone else had experienced it.
I have what has been called by an Orthopedic Consultant 'Significant Iliopsoas weakness'.
Essentially, for six months I have been unable to lift my legs when I am lying down or reclining in a chair. (Active straight leg raise).
They wont move, I can see the thigh muscles and abs tensing but nothing lifts the legs when straight! It is like someone is sitting on them, or there are concrete blocks hanging off them. I have no pain or pull on my back muscles. As soon as I bend the knee I can move them.
Has anyone had or heard of this experience? I find very little info online on iliopsoas weakness.
I am writing this after being stuck in the NHS MSK system for 6 months where I was misdiagnosed with a herniated disc. During this time a full MRI and CT has ruled out anything in the brain and spine, other than some lumbar stenosis.
I have just been referred on to a rheumatologist which I have decided to pay for to speed things up. I am still not sure if I should be heading for neurology but the ortho consultant (after assuring me the weakness is nothing to do with my back) has sent me there first.
Clinical obs so far have been; 'Marked' Trendelenburg gait. Bilateral Trendelenburg tests. Hip Flexor weakness (MRC Grade 3). Mildly positive Rombergs test. Clonus 3 beats in both ankles. Plantars up-going on the left but down going on the right. She was unable to tip toe walk. Prioprioception in the toes was 10/10 on both sides.
Does this weakness sound familiar to anyone? I can find very little online despite searching A LOT. I am waddling, my left leg is weak and I cant walk far at the moment (I was very active until the last year or so), Does anyone have any idea as to why this severe weakness only happen when I am reclining and lying down if it is not to do with the spine or cord? I don't get it!
I have various other symptoms which I wont bore you which may be down to age (50).
I am totally baffled about this weakness and the Ortho was too. So much so that his referral to the Rheumatologist says ''Thank you for seeing this lady who has an interesting problem that I really can not work out'. I smiled at that but am anxious and frustrated with waiting - and worrying.
Also, would I have the UMN signs if this was an autoimmune/rheumy issue? I am so confused (and may be just about to waste £300 pounds on a rheumy!)
Sorry for the length of this, hope I didnt bore anyone but any experiences would be very much welcomed!
Thanks again and much respect, Michaela