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mic67

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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
 

lgelb

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I don't think the rheum approach is necessarily the first way to go, especially for cash, but will let our resident rheumie have that one. Were the nerves that control the hip muscles tested? This seems like a localized kind of thing and agreed not MND-like.

Best,
Laurie
 

mic67

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Thank you for replying Laurie.

No, I have had no nerve tests yet. I think the reason I have been referred to rheumatology in the first instance is because I have a few other, possibly systemic issues going on. There are reduced range of shoulder movement and pain, stiffness in hands, weight loss and fatigue.
I am also having an endoscopy for food getting stuck in my throat although this is only certain foods.
All that said, I am sure the above are part of some rheumatic condition and still wouldn't explain being unable to lift my legs.

Going by some of the posts on here, it seems an EMG would be helpful and I am annoyed the ortho hasnt recommended this!
 

KarenNWendyn

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In answer to your first question on iliopsoas weakness— I have had iliopsoas weakness for about 10 years preceding my ALS diagnosis. In my case, it is a mechanical problem related to congenital malalignment of my spine, hips and knees and has nothing to do with ALS.

Looking at your situation, the challenge is to determine if there is one overarching condition that can explain all your symptoms, or if you have more than one condition.

Your first post mentions weakness and some upper motor neuron signs such as non-sustained clonus and up going toes on the left. Your second post mentions “reduced range of shoulder movement and pain, stiffness in hands, weight loss, and fatigue”. You also mentioned certain foods getting stuck in throat.

So based on your second post, I am concerned about something systemic. If could be rheumatologic, such as a connective tissue disease (rheumatoid arthritis, lupus, Sjögren’s syndrome). It could also be a malignancy or a toxic or metabolic condition. The connective tissue diseases often overlap with one another and can have muscle inflammation as an aspect of their presentation, resulting in weakness. Lupus and Sjögren’s syndrome occasionally also can involve the central nervous system and may include upper motor neuron signs.

My recommendation would be to start with an internist, if you have not already done so, as there are other systemic non-rheumatologic conditions that might be at play here (malignancies and toxic/ metabolic). The evaluation should include a thorough history and physical exam, and labs looking at CBC, sedimentation rate (ESR), chem panel, thyroid function tests, urine, ANA and ANA panel, rheumatoid factor and anti-CCP antibodies, and a chest X-ray. Depending on history and physical, the internist might want to check tests for iron and copper overload, lead levels, PTH. A rheumatologist evaluation would be a great next step after a thorough general medicine evaluation.

I don’t think you have ALS either.
 

mic67

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Karen,

Thank you so much for such a comprehensive reply. I will certainly take your suggestions to my appointment this week and I am inclined to agree there may be more than one thing a play here.

Funnily enough, I was so anxious this morning that I booked an appointment with a top osteopath. Mainly for an assessment in between specialists and not for a treatment as such.
He did all the neuro tests and told me to forget about the 'iliopsoas weakness' (which I had taken from the surgeons letter. He said my entire lower half is weak, ie/could not raise from a squat, both big toes weak, couldnt walk on heels or toes or do heel to shin etc. He also said I had some co-ordination issues during the finger to nose neuro test.

He said in his entire 28 year career he had only seen one similar presentation and it was an elderly woman with Myasthenia Gravis. (similar to what you said above!)

I do feel very unwell as this has been going on for months and months.

I will feed back when, if ever I get a diagnosis and thank you again.
Michaela
 

mic67

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Karen, I also forgot to mention that the plantars were normal today but he said the reflexes were very brisk.

I hope it isnt Lambert Eaton as many of the symptoms fit and I was a smoker for years. Uggh
 

KarenNWendyn

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The time course and pattern of weakness don’t suggest ALS at all. Abnormal finger to nose and abnormal Romberg also argue against ALS.

Please come back and us know the final verdict after it gets figured out. You need a chest X-ray for sure.

Best of luck.
 
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