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Walstorj

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Thank you for taking the time to read what I have going on.

I am a 44 years old mom of two adult children and a 10 year old. Last month, my boss called an ambulance and had me taken to the hospital because I was having problems talking, couldn’t swallow and couldn’t lift my leg and I panicked. I spent 3 days in the hospital where they did a stroke workup - neurological exam, CT of my head and neck(both normal) MRI of my head (also normal) and a Echo bubble study of my heart. I had confirmed weakness in my right arm, leg, tight side of the throat and drifting.

My weakness got better over the first 24 hours and I was told to follow up with my PCP, Cardiologist, hematologists and Neurologist and diagnosed with “stroke like symptoms with unconfirmed stroke”. I have since had a cardiac loop recorder implanted to monitor my heart to see if I have an abnormal rhythm with my heart that my cardiologist put me on. I have seen the hematologist who did more bloodwork - HIV, hep A,B and C, some inflammatory test(don’t know it’s name) and CBC/Chem, and Vit D, lymphoma tests, and ultrasound of throat. Everything was normal aside from low Vit D.

At my neurologist appointment, they had me see the nurse practitioner to get me in quickly. She did a full neurological exam. Confirmed I still have weakness in my right leg and hand and throat and twitching in my toungue. I had hyper reflex in my left knee and no reflex in my right. I have been scheduled to have an EEG next week, and a EMG of my right side the following week.

After I eat, my throat gets where I feel like the food is stuck and sometimes my saliva gets stuck too. If I touch my throat when this happens I can feel my throat twitching. Twice I have had problems where my tongue won’t move the way I need it to to get the food to go down, but that has only happened twice.

I do have twitching regularly that is annoying but it comes and goes.

I am asking my neurologist office if they can do the blood test for Myasthenia Gravis to see if maybe that’s what is going on so we can get the results back before the EMG.

I am on here because I wanted to ask if there is any other bloodwork I should ask for to rule out other disorders? I know the EMG is the best test but I don’t want to create anxiety waiting any longer after the EMG for blood work to come back if I can get the blood tests now. My Neurologist hasn’t given any diagnosis yet, as they want to see the results of my EMG first and don’t want me to worry. Basically they said “we don’t know what is causing this weakness but we will do tests to find out”

I appreciate any comments, or advice on what additional testing I could have done. Or any thoughts about my symptoms if you feel obliged to do so. Thank you, and god bless.
 
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KarenNWendyn

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Assuming the symptoms came on as suddenly as your post suggests, ALS is not a consideration. Also, the improvement in some of the symptoms points away from ALS.

Obviously they were thinking stroke, possibly from a blood clot, as that can bring on acute symptoms. So you need a clotting workup, and it sounds like you might have had that since you saw a hematologist.

Make sure they test for anticardiolipin antibodies, which can cause an autoimmune type of clotting problem. Also ask if vasculitis is a consideration. An imaging study called MRA can help shed light on that if your doctors think it’s relevant.

Beyond that, it sounds like you are still in the process of being evaluated. Sometimes it takes time and seeing a variety of specialists to arrive at a diagnosis.

EMG is useful for investigating a variety of conditions, not just ALS.

But your presentation does not suggest ALS.
 

Walstorj

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Thank you. I had a CT Angiography of my head and neck in the hospital which was normal, and all of the blood clotting workup tests for clotting disorder were all normal as well. They can’t do anymore MRI’s now that I have the loop recorder in my chest, unless they take it out.

My neurologist PA doesn’t think it was a stroke, because all of the test results have been normal pointing away from a stroke or TIA which is why they are doing these other tests. They are however keeping me on Blood thinners, and just in case. I also take Metroprolol for positional tachycardia, and Inappropriate sinus tachycardia that I have been on for three years. (My resting HR is 120 without the med - 80’s with it). The loop recorder is a precaution as well.

My neurologist PA hasn’t said anything aside from the above, and that she will figure it out with these tests what exactly is going on.
 
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