Seeking clarification on guideline post (symptoms)

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Millyana

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Joined
Feb 25, 2024
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Learn about ALS
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00/0000
Country
UK
City
Edinburgh
Since the beginning of December (2023), I've noticed my thumb twitching and getting thinner than the other. Then, my arms and legs had this heavy feeling go a tiredness without reason. I went to my GP and she did all the blood work possible. Even did a CT scan. All clear. Other than hypothyroidism, which I'm medicated for it, I am healthy and fit. During January and now February, symptoms have been accumulating fast. My right leg got weaker and my foot keeps getting caught frequently. My right arm is also weak. I'm having trouble typing and doing fine motor tasks. Pins and needles in patches everywhere. Some night sweats (non-menopausal related) and low blood pressure - my normal BP is already on the low 100/60 but have been going to 92/56 lately. Have a neurologist booked for the 5th of March. I hope to get more clarity from him but came here in search of guidance to prepare me for my upcoming appointment. It's my understanding that an ALS diagnosis can be tricky and take many months. That is why it made me confused to read on the "read before posting' session this bit:

'It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb, but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work. First it is one muscle, then another ,then another so the things you can’t do increase. This is why you see progressive weakness mentioned'

I can still button a shirt and raise my calf. Even though it takes longer and it's harder due to the weakness. Reading this post gave me a lot of hope, but I don't want it to be a false one. My point is, if it was so 'clear cut' to identify ALS symptoms, why would it be so hard and take so much time, and even require a second opinion? Am I misreading the info there? Please, I hope someone could clarify this for me.

Thank you for being here and creating such an important space.
 
That is the best explanation we can give. As it states things that use more than one muscle become hard but some things vanish suddenly. Certainly my ability to do a calf raise did. I could have told you the exact hour

The diagnosis of ALS is not usually hard when you get to the right doctor. There are often delays and detours before seeing a neurologist. Waits for appointments with primary, ortho, rheumatology, trials of meds or pt. Once ALS is on the table there are tests to rule out mimics because you don’t want to miss something treatable. And we recommend a second opinion because even experts can be wrong but also different ALS specialists have different approaches. My sister who like me was FALS saw three even. I don’t think she doubted the diagnosis it was to get input into how to approach it.

Pins and needles are sensory which points toward something else as do night sweats and hypotension It also seems unlikely to have such aggressive ALS that it has affected you head to toe in a couple of months yet has not really disabled you. Btw a CT scan has a lot of false negatives for MS. MS. really needs an mri. March 5 is very soon. You will have more information after the visit but I expect they will order more tests. Good luck and let us know
 
I agree with Nikki. They will most likely do an MRI and more blood work to see if it's an autoimmune process. Best wishes. In the meantime, try to get good sleep, hydration, and nutrition.
 
Thank you so much and I will def keep you posted here.
 
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