APS and swallowing problems?

[Seeker]

I may have asked this before, but let me ask a more focused question for those who have APS: Have you had unexplained swallowing problems - progressive or fluctuating? If so, did any doctor indicate that this might be caused by the APS?

I ask because I seem to be having increasing swallowing difficulties, including liquid and food coming back up into throat after swallowingt and even through nose; after years of intermittent, mild swallowing problems, which have never been really explained. My fear is that this is evolving into ALS or something similar.

[JoD]

Have you seen a GI doctor? The brief description sounds like reflux. Do you have other issues like diabetes that slows down gastric emptying? All of this can be investigated through the GI department.
Joanne

[Seeker]

I just saw an ENT doctor today. He doesn't seem concerned about atrophy or progressive neuromuscular disease and he did check for reflux (tube down the nose). Doesn't think I have significant or chronic reflux, but based on my description, that I've had it at times. Even if I do, though, doesn't seem this would account for all my symptoms. I may have pre-diabetes.

Thanks

[SuzieSueSue]

Were you ever tested for Sjogren's Syndrome?

I was diagnosed with APS, and four months later, Sjogren's Syndrome. It effected the levels of moisture my body creates - i.e. eyes, mouth, throat, etc.

Good Luck!

[Razzle0]

I have the Lupus Anticoagulant, and also have had mild swallowing difficulties for years. Then in the summer of 2008, I woke up completely unable to swallow anything (including saliva). Doctors couldn't explain the problem, so no treatment was given. I've been on TPN (fed through a vein in my arm) ever since. My swallowing has slowly improved, but I'm still not able to swallow much without difficulty. I have no idea if it has anything to do with APS, and I do have motility problems elsewhere in my gut (gastroparesis, etc.). I don't have Diabetes or Sjogren's, but I might have Lupus (or something that mimics it), and I do have some other health issues. I just found your post interesting because of the similarities to my own swallowing issue.

Have you had an endoscopy? If so, did the doctor take biopsies of your esophagus? Have you had a swallowing study (barium x-ray)?

Good luck,

-Razzle

[Seeker]

Razzle,

Tried to post a few days ago but either the site was down or I couldn't access it.

I have had various barium swallow studies, mostly negative, and an endoscopy with biopsy in March (mainly looking for Celiac disease) with was reported negative. A speech therapist found muscle weakness and other deficits related to speech and swallowing last November, though another one did not. The former, however, did more extensive testing. I am being evaluated for a possible muscular dystrophy (possibly Mitochondrial Myopathy or maybe Myotonic Dystrophy type 2), but these do not seem to completely fit. I just wonder whether the APS or maybe the low IgM I have might cause the swallowing problems.

Your story is scary; going from mild swallowing problems to being unable to swallow at all. Hope you continue to have improvement with this. Do you have any other problems with muscle weakness?

[Suzette]

Razzle,

i too had problems swallowing and then one night at dinner i just couldn't swallow. i couldn't explain it everyone thought i was crazy. i have lost 20+ pounds. my doctors just have me do one torturious procedure after another. i've had a negative baruim swallow, egd that showed spasms and low motiliy, as well as a endoscopy up my nose and down my throat. i'm still awaiting the results on that. its been 3+ weeks and still no answers. but they continueally allow me to lose weight as a posed to taking action. the most they have done for me is put me on 30mg of prevacid and sent a speech therapist to help. she did nothing for me at all except made me feel worse. my doc's know i have lupus, sjogrens, and so forth and nothing. i have been eatting the same liquid diet for 1 1/2 years and it stinks. i just want a philly cheese steak with extra onions and peppers. and i can't its so frustrating. what causes this to happen. why can't they figure it out. i just want some answers.