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KatyD

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Hi, I have been struggling with vague but troubling symptoms for 12 years and I know that time frame in itself calls into question the validity of whether what I am experiencing is ALS. I have seen a neurologist in 2004 and had a clear MRI scan. The symptoms I have are heavy legs, that feel wobbly after going upstairs a few times or even just waking up some days they feel like this. My arms too often feel heavy, I can lift them but say holding a hairdryer for a few minutes the aching pain is too much, I m not clumsy at all and I can still do fine motor activities such as thread a needle. I get multiple fasiculations all over my body at rest, I cannot see any muscle wastage at all. I experience Extreme fatigue (which led an Endocrinologist towards a Chronic Fatigue diagnosis in 2013). Constant vertigo symptoms and now more recently more worrying to me I have developed Horner's Syndrome left pupil (CT Scan brain is clear), my neck muscles ache and feel weak, the left side of my face intermittently feels numb and I get a buzzing/tickling sensation in my throat. Muscles across my shoulders also feel weak and ache. GP has referred me back to the neurologist but at the back of my mind is bulbar onset ALS. My main question is has anyone who has a ALS diagnosis started off with Horners Syndrome? Is it at all associated with ALS? Thank You in advance for any input people may have.
 

CiCi

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Katy, I had Horners Syndrome that was related to cluster headaches. Just a thought. Claire
 

KatyD

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Thank you Clare, I do get migraines but not cluster. The Horners hasn't returned to normal at all since 23rd Dec 2015, that's why my gp asked for me to be seen by a neurologist again as he said if it was related to my migraines it would resolve in between attacks??? I don't know how accurate that is? Plus my taste of sweet items is distorted, everything sweet tastes vile all other tastes, Salty/Sour/Acidic are all ok.
 

Atsugi

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Katy, in all those symptoms you wrote, you didn't describe anything at all that could be ALS. In fact, your pain and heavy feelings and length of this condition all point way from ALS to something else.
 

KatyD

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Thank you, I knew the time frame from my initial symptoms contradicted what I have read and experienced in nursing practice of ALS but my symptoms just seem to be accelerating so that I m doing very minimal exertion and yet the fasiculations, the wobbly legs, burning/tingling sensations are worse than ever coupled with the now new Horners and face numbness and the doctor mentioned ALS when referring me to a neurologist. Thank you for your re assurance and time to even look over my post.
 

KimT

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Still nothing sounds like ALS.
 

KatyD

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Thank you for your response Kim.
 

KatyD

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Update.
I had my Neurolgy appointment with a very thorough examination by a consultant neurologist as I still have the Horners Syndrome symptoms, coupled with the other symptoms I explained previously and now burning/prickling sensations intermittently anywhere on my skin from scalp to ankles :/ and such severe middle back pain circling around abdomen in a full circle like a nerve root pain :( I expressed my fears of ALS and relayed all my symptoms in depth and I was hoping she would say this does not sound like a typical picture of ALS, instead she said the fasiculations coupled with altered sensations such as the burning, prickling sensations I have been experiencing could point to motor neurone involvement so we have to look into this further.
Have had a chest x Ray as Horners is often associated with a upper lung tumour called a Pancoast tumour and am awaiting now an appointment for MRI head and Neck and a Doppler ultrasound of my neck vessels to look at blood flow in case there's an arterial
cause. Depending on head and neck MRI results I will also have to have nerve conduction studies. It is important to note there are benign causes of Horners as well but unless the attacks of migraine or cluster headaches are very frequent then the Horners usually disappears between attacks.
I really had hoped she would tell me how stupid my notions of ALS were, so now I feel
More anxious than ever. :(
 

Atsugi

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Katy, am I to understand that you believe you have had ALS for 12 years, without any significant weakness?

And now your doctor has said that "fasiculations coupled with altered sensations such as the burning, prickling sensations...could point to motor neurone involvement."Are you sure this is what the doctor said?
 

KatyD

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Hi, yes now both my General Practitioner who referred me to the Neurologist mentioned ALS and now the Neurologist when ordering all the new tests specifically stated..we have to look into this further as the fasiculations coupled with the altered sensations you have been experiencing could point to motor neurone involvement. Even though she completed strength tests, upper and lower which she said were fine???
 

KatyD

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Have worryingly woken up today with severe muscle pain in both my arms and wrists, both ankles and calves, across my shoulders and neck and pelvis!!! Feels like I ve been hit by a bus :(
 

Atsugi

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"both my General Practitioner who referred me to the Neurologist mentioned ALS and now the Neurologist ...could point to motor neurone involvement."

Well, I certainly won't argue with a medical doctor who physical examined you.

I'm sure you know by now that your last post hitting you with bus doesn't have anything to do with ALS, right?
 

KatyD

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Update so far is that the chest x-ray was clear, so no Pancoast tumour causing the Horners. My Carotid Artery dopplers were fine so no dissections, sclerosis or aneurysms. I have my MRI this Friday.
Symptoms wise, the Horners is still there, Vertigo type symptoms have increased, the fasiculations are wild just everywhere, strange burning sensations again anywhere from face to feet, face feels like I have washed it with soap, that really tight/tingly sensation and just an overwhelming weakness, again I can perform a task such has holding a heavy shopping bag but my arms tire much quicker and the feeling of weakness lasts. Same in legs, yes I can walk on my toes/heels but after doing that my legs go really weak. Thank you everyone for all your input so far x
 
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