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Old 05-15-2016, 07:50 AM #1
teachermom teachermom is offline
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I plan to call my neuro tomorrow because I am a little nervous about my swallowing problems. I have also been noticing weakness in my hips. When my SFN journey began, I also had high amounts of antibody jo-1 which is associated with polymyositis--a disease that attacks muscles. I am a little fearful that this is related. The weakness in my hips is very similar to what I experienced back when jo-1 was present.

I appreciate the calming words. I kept reminding myself that nortriptyline had the same effect on me last time. I had panic attacks when coming off of it. Last night was much better. Hopefully I didn't take it long enough this time to have long lasting effects.

I hope everyone has a happy Sunday. I plan to actually go out and try to run a little, not far, just enough to get my mind right.
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Old 05-15-2016, 08:27 AM #2
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Hi Teachermom,

Just a suggestion that may calm your nerves a bit would be to see an ENT doctor...they can take a close look see with a scope in other to rule out anything else that may be happening. I just had such a procedure a few weeks ago because a recent MRI showed a possible cyst in my throat....I felt better after seeing the ENT doc.

Hope this helps.......

Wishing you a great run,

Cliffman

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Originally Posted by teachermom View Post
I plan to call my neuro tomorrow because I am a little nervous about my swallowing problems. I have also been noticing weakness in my hips. When my SFN journey began, I also had high amounts of antibody jo-1 which is associated with polymyositis--a disease that attacks muscles. I am a little fearful that this is related. The weakness in my hips is very similar to what I experienced back when jo-1 was present.

I appreciate the calming words. I kept reminding myself that nortriptyline had the same effect on me last time. I had panic attacks when coming off of it. Last night was much better. Hopefully I didn't take it long enough this time to have long lasting effects.

I hope everyone has a happy Sunday. I plan to actually go out and try to run a little, not far, just enough to get my mind right.
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Old 05-15-2016, 08:33 AM #3
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You might want to post on our Myasthenia Gravis forum here.

Muscle weakness and swallowing problems can be symptoms of this.

The members there are very helpful and can suggest tests you can get.
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Old 05-15-2016, 09:05 AM #4
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Dear teacher mom,

I have an incompetent esophagus which was diagnosed in 1998 and had never bothered me much before that, or afterwards until I also developed Sjogren's like dryness.

An incompetent esophagus occurs when one part of the esophagus doesn't constrict with the peristalsis that moves your food down your esophagus.

When that happens the food in that part of your esophagus stops moving and 'sticks there'. It can hurt, or it can be almost unnoticeable until the rest of the food you are chewing and swallowing piles up and backs up into your throat and mouth.

It is very unpleasant and can be scary. This usually occurs with soft dense food like white meat of chicken or turkey, or a bagel, for example.

But it can occur with anything.

Best wishes in your medical journey.

Hugs, ElaineD
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Old 05-15-2016, 05:57 PM #5
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Quote:
Originally Posted by ElaineD View Post
Dear teacher mom,

I have an incompetent esophagus which was diagnosed in 1998 and had never bothered me much before that, or afterwards until I also developed Sjogren's like dryness.

An incompetent esophagus occurs when one part of the esophagus doesn't constrict with the peristalsis that moves your food down your esophagus.

When that happens the food in that part of your esophagus stops moving and 'sticks there'. It can hurt, or it can be almost unnoticeable until the rest of the food you are chewing and swallowing piles up and backs up into your throat and mouth.

It is very unpleasant and can be scary. This usually occurs with soft dense food like white meat of chicken or turkey, or a bagel, for example.

But it can occur with anything.

Best wishes in your medical journey.

Hugs, ElaineD

Maybe it will turn out to be this. The food getting stuck feeling has been going on a while. But last week, it was awful. There was a wheezing noise when I tried to breathe. I actually thought great, a piece of chicken is how I will die. I could kind of feel it in my chest for a while afterward, not nearly as terrible as when it was stuck at the top of my throat. I have been very, very careful since this happened to cut my food into tiny little pieces. Definitely am having gerd issues. Lots of heartburn and indigestion. I plan to call my neuro because quite honestly, I do not trust any doctors in my area. It takes 4 hours to get to him, but well worth the drive.
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Old 05-15-2016, 06:04 PM #6
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Cannot thank you all enough for calming me back down.

SFN is such an odd set of symptoms. I thought I could just keep right on living without making any real changes. I was hoping I would get to run at least 1 more half and get under two hours, which was my goal before all of this. But lately, I am awakening to my new life. I am not really giving in, but I am adjusting my expectations.

I am so appreciative that there are others out there who are experiencing this also and understand how terrifying parts of it can be.
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Old 05-19-2016, 06:19 AM #7
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OMG!!

Sometimes this happens to me, especially with carbs and peanut butter. It's been going on 10 years and is possibly also related to acid reflux I think. But yes I too have had a couple choking incidents and went through a period where I was too scared to eat in public for fear of choking in public. My husband told me that I eat way too fast since it takes everyone twice as long to eat than me. I know consider the possibility that I don't chew my food and I eat too big pieces and that has contributed to this as well. I do hope you feel better soon!
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