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Old 11-21-2019, 05:17 PM #1
MistyD MistyD is offline
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Default Don’t know what to think

I don’t know what to think about the crazy symptoms I’m having. Went to neurologist earlier this week. He ordered a blood test and scheduled an extremity test in January. That’s 2 months away.
I have had Sjögrens for 20 years and my thyroid was removed in 1999. I also have Interstial Cystitis with Hunners ulcers. IC is it’s own version of hell.
Last summer 2018, I started having some issues with swallowing. Started cutting my food smaller, even chicken nuggets. Started having blurry and double vision, but thought it was time for an eye exam. The vision issues kind of come and go.
I noticed around that time that my right eyelid sometimes looked a little lower than the left, but it wasn’t real noticeable to other people. Had a bad episode of vertigo in December 2018. Made the decision to close my shop and move my business back home. So glad I did.

Right after my birthday (51) at the end of August, I started having trouble chewing and swallowing. I can’t swallow food without water unless it’s something fairly wet. By early September, I couldn’t grip things in my right hand. I’m a seamstress, making children’s clothing, accessories and machine embroidery. I realized something wasn’t right in my hand when I had so much trouble making a hair bow and couldn’t hang on to the folded ribbon. Took me all day to make 10. I used to be able to do 25-50 bows in an evening. I started dropping things a lot. Just slips right out of my hand. The feeling in my hand is strange. Feels like when you hit your funnybone and the last three fingers feel really weak. I can no longer open water bottles or jars that haven’t already been opened.
Then the weakness in my arms started right around the same time as the hand weakness. Hanging or folding laundry feels like I’ve been lifting weights. Putting on my bra or taking off my shirt is a struggle.
In early October, my muscles started twitching. It’s random and tends to happen more at the end of the day, but happens when I sit or lay down. First time I noticed was my right thumb. Now it’s my thigh muscles, left forearm, back rib,neck and sometimes my right foot. Neck twitches are the most annoying, but none of it hurts. I’ve also have burning pain on soles of my feet. I think that’s related to Sjögrens neuropathy. Sjögrens also causes horrible dry mouth. I go no where without a glass of water. I even wake up during the night to drink because mouth and tongue gets so dry.

Now I feel it in my legs. Mostly when I go up stairs and get in my van. But in the last week, I can’t stand back up if I squat down. Thighs just refuse to push me back up. I’m tired all the time. Seems like I do recover some after I rest a little, but I never feel like I used to. I use to walk daily, garden and did things with my grandchildren. Now I don’t even like to leave the house. Grocery shopping is exhausting. I went from being able to carry two 5 gallon buckets of water to struggling to pick up a gallon jug and putting it in the fridge.
Ive lost 20 lbs since early September.

I went to my endocrinologist in October and he said it sounded like myasthenia and told me to go to neurologist. My husband is concerned that it may be ALS. I refuse to entertain that idea unless neuro confirms it. I still think mg, but the twitches worry me, especially the ones in the right thumb.
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Old 11-21-2019, 09:00 PM #2
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Hi MistyD

Welcome to NeuroTalk .

I am sorry to read about what you are experiencing.

I think that your endocrinologist has a good idea in suggesting that you see a neurologist.

I hope that will be of help to you.

All the best.
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Old 11-22-2019, 07:32 PM #3
4-eyes 4-eyes is offline
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I suggest you see another neurologist. The weight loss, coupled with the ever increasing symptoms is not something to be taken lightly. You need answers--yesterday.
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Old 12-06-2019, 12:55 PM #4
levisanz levisanz is offline
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Quote:
Originally Posted by MistyD View Post
I don’t know what to think about the crazy symptoms I’m having. Went to neurologist earlier this week. He ordered a blood test and scheduled an extremity test in January. That’s 2 months away.
I have had Sjögrens for 20 years and my thyroid was removed in 1999. I also have Interstial Cystitis with Hunners ulcers. IC is it’s own version of hell.
Last summer 2018, I started having some issues with swallowing. Started cutting my food smaller, even chicken nuggets. Started having blurry and double vision, but thought it was time for an eye exam. The vision issues kind of come and go.
I noticed around that time that my right eyelid sometimes looked a little lower than the left, but it wasn’t real noticeable to other people. Had a bad episode of vertigo in December 2018. Made the decision to close my shop and move my business back home. So glad I did.

Right after my birthday (51) at the end of August, I started having trouble chewing and swallowing. I can’t swallow food without water unless it’s something fairly wet. By early September, I couldn’t grip things in my right hand. I’m a seamstress, making children’s clothing, accessories and machine embroidery. I realized something wasn’t right in my hand when I had so much trouble making a hair bow and couldn’t hang on to the folded ribbon. Took me all day to make 10. I used to be able to do 25-50 bows in an evening. I started dropping things a lot. Just slips right out of my hand. The feeling in my hand is strange. Feels like when you hit your funnybone and the last three fingers feel really weak. I can no longer open water bottles or jars that haven’t already been opened.
Then the weakness in my arms started right around the same time as the hand weakness. Hanging or folding laundry feels like I’ve been lifting weights. Putting on my bra or taking off my shirt is a struggle.
In early October, my muscles started twitching. It’s random and tends to happen more at the end of the day, but happens when I sit or lay down. First time I noticed was my right thumb. Now it’s my thigh muscles, left forearm, back rib,neck and sometimes my right foot. Neck twitches are the most annoying, but none of it hurts. I’ve also have burning pain on soles of my feet. I think that’s related to Sjögrens neuropathy. Sjögrens also causes horrible dry mouth. I go no where without a glass of water. I even wake up during the night to drink because mouth and tongue gets so dry.

Now I feel it in my legs. Mostly when I go up stairs and get in my van. But in the last week, I can’t stand back up if I squat down. Thighs just refuse to push me back up. I’m tired all the time. Seems like I do recover some after I rest a little, but I never feel like I used to. I use to walk daily, garden and did things with my grandchildren. Now I don’t even like to leave the house. Grocery shopping is exhausting. I went from being able to carry two 5 gallon buckets of water to struggling to pick up a gallon jug and putting it in the fridge.
Ive lost 20 lbs since early September.

I went to my endocrinologist in October and he said it sounded like myasthenia and told me to go to neurologist. My husband is concerned that it may be ALS. I refuse to entertain that idea unless neuro confirms it. I still think mg, but the twitches worry me, especially the ones in the right thumb.
Much of what you describe closely resemble what I have been experiencing.

I was diagnosed after MG was found in my blood. I too will get random twitching in my back, fingers, thighs and mostly at rest. It might be due to weak muscles being overused (and for a person with MG just doing dishes can be overuse).

Presently my weakness is always present but doesn't fluctuate as quickly because I'm on so many meds. When I lay in bed to sleep, my body plays a strange game of pinball where I get a twitch in my back, which twitches my arm, which twitched my thigh. Then it's the restless arm or leg syndrome that keeps me up for a while.

My other symptoms include walking instability and muscle cramping in my hands and calves. Using a knife and fork feels weird and I will drop things that require a light touch. At this point doing stairs is damn near impossible.
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