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Kchuck24

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Hi, I have posted here before but am still feeling worried as I feel things are progressing and hoping for any insight. I appreciate anyone taking the time to read this and honest opinions. I am a 29 year old female.

Full story:
August 2020: few muscle twitches .. thought nothing of it. Assumed low electrolytes. Tingling began full body. Started in feet went up legs, felt it in hands, had tingling in face etc. lasted till about mid October then now it’s a very rarely occurance that I get tingling and if I do, it’s in my feet.
Mri of head/thoracic/ and cervical was done all clear.

October 2020: noticed my thigh muscle was different. As in, when I’d be walking sometimes it would hike up. Or taking a step it would stiffen. It felt weak. I would sometimes have to stop and rest my thigh because it felt overworked and tired. Twitches began in the leg. I started thinking maybe I had a back issue or I have a toddler always on my hips affecting that leg. But I went to a new neurologist in December in 2019 to have it examined. Clear clinical exam and he performed emg January 2020 of my leg, back, and arms and all was clear.

February 2021: lots of blood work ordered and all came back clear. Vitamin levels, Ana, thyroid etc. things that could cause tingling or weakness. Because all clear and still having symptoms Neuro referred me to neuromuscular.

May 2021: went to neuromuscular at uf health Jacksonville. I did not see dr pulley like my previous post suggested. There was a colleague of his that had more free openings so I went to him. He did strength and reflexes and all was good. At this time I was starting to have issues in my left arm. My hand and arm felt heavy. I could lift it and do things but it felt strained and heavy and bending my fingers would sometimes make the joints feel uncomfortable. I was pregnant at the time so he thought maybe carpal tunnel. So did ncs/emg of both arms and my left leg since it still was a problem and said all was clear. He gave no diagnosis and just kinda left it at sometimes things happen to our nervous system and we don’t know why which I was accepting of but have still been on the hunt for answers.

September 2021: went back to original neuro and still having these issues with left leg and left arm. The left thigh muscle stiffens a lot as I’m walking. And my left hand feels like there’s not as much power in it as my right. My fingers get shaky and the arm will be heavy. Twitches in these areas as well. My cheek muscles are now extremely tight and I’ll get pressure in the back of my skull sometimes as I’m talking as if I’m just working harder to talk clearly. My husband or anyone has not noticed slurring which is great from what I’ve gathered reading on the posts.

Because of symptoms still “progressing” neuro is referring me back to neuromuscular. I am seeing dr pulley Jan 6 for repeat emg. I am nervous but hopeful having clean emgs so far. Not sure if any of my symptoms are UNM. No brisk reflexes or spasticity noted on exams either. I appreciate the time reading this and just curious on thoughts from anyone. Thank you so much.
 
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lgelb

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Your first issues were August 2020, your last clean EMG was nine months later. As well, you have feelings like difficulty talking that are not perceived by others, you are still able to do normal activities, and evidently no one has found clinical weakness.

Let us know what happens with Dr. Pulley, but it's hard to think of ALS.

Has anyone suggested a trial of hand therapy, for example, to test the proposition that improvement is possible? Low-dose B complex/iron supplementation? Blood work does not always tell the whole story, especially when you have a toddler and a baby. I would also consider videoing your sleep to see what is happening with your positioning and your left side.

Best,
Laurie
 

Kchuck24

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Thank you. I appreciate so much you taking the time to respond. And what you have said is correct. No one has reported clinical weakness to me. These symptoms are just very strange to me.

No, no one has suggested any of that. I will report back after my visit in January and depending on dr pulleys thoughts, I will mention these suggestions to either him or my pcp. Thank you again for responding and clarifying things for me.
 

affected

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I know you feel things are progressing, but in reality they aren't, not clinically.
I hope this appointment in January brings you some peace - please do let us know the results then.
 
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