trouble swallowing?

Hi!

It happens to me when I am in a bad flare of neuro symptoms, in which extreme muscle weakness is one of my big issues,  and it is truly frightening. I tried to explain it to my dr. and he blew me off. My neuro acted as if he really believed me and even tested me for myasthenia gravis. Since that was ....surprise....normal, my rheumy just shrugged. So I went looking, and found that dysphagia is really not uncommon in lupus. for me, it is just a brief inability to swallow, as if the reflex to even swallow my secretions is gone. And if I happen to have food in transit, it is horrifying. Twice I came close to panic. I have episodes of upper rt. sided abdominal pain, sharp and thankfully brief that usually happens the day before diarrhea/mucus, too. Usually every 5 months or so. And if it's really sharp pain, it travels up to my rt. shoulder. (That can be a sign of gallbladder trouble). No, we are not imagining things. Ain't lupus fun?

suetoo

This is confusing stuff.....Sue or Bill - do you think a muscle relaxant would be helpful when this flares up?  Seems like it could be triggered from spasm, general inflammation or from a neuro source that brings about the other two.  Probably a chicken or egg kind of thing in terms of what came first.

Sue - I have the rt sided pain, and pain in my ribs also.  I would have thought gall bladder the first time that spasm went up into my shoulder - very painful and similar to a GB attack, but I had it out nearly 20 yrs ago.  Constipation seems to be my counterpart to the "stuck in the gullet" problem.  Made me think it had to do with overall dryness as a culprit. 

I did read that certain medications can contribute to the dysphagia - and calcium tablets are included in that list.

 

I was told when I had my manometry study done I had a third non-productive movement in my esophagus. They had no idea why I had it. It's been two years since the test and now I've been diagnosed with lupus.

No, I had the test when I was getting ready for my acid reflux surgery. I did have the surgery, but with modifications. They did a 270 degree wrap on me instead of the full wrap. They said it could cause problems getting food down passed a full wrap.

Bill - as it happens I got my results today.  Everything was normal except for having a "Prominent cricopharyngeal bar". 

Here's what I found out about that:

   

"The cricopharyngeus muscle lies caudad to the inferior pharyngeal constrictor, and functions as an upper esophageal sphincter. During the swallowing cycle, the cricopharyngeus relaxes to allow the food bolus to pass into the esophagus. Incomplete relaxation of this muscle results in cricopharyngeal bar or achalasia. It can be idiopathic, secondary to neuromuscular diseases (polymyositis, muscular dystrophy, polio, stroke, amyotrophic lateral sclerosis, etc), or a response to gastroesophageal reflux. It may be an etiologic factor for the development of a Zenker's diverticulum, since it can cause increased pressures in the hypopharynx. It is believed that a cricopharyngeal bar accounts for 5-25% of dysphagia."

So....I guess it could be a piece to the puzzle, or not related at all.   As usual - an answer that only prompts additional "maybe's" in terms of the UCTD.   In any case, I appreciate your input and will pay attention to any worsening.

Joy - thanks for your response.

Lucy

Oddly enough,,,now also I want you to know I am new to all of this mess but I have had the most awful terrible mouth thing going on for about three months now.  I did have a surgery that went horribly wrong and the main complication was a type of malnutrition that you see in third world countries but one of the worst symptoms was my mouth felt like I had just chewed on razor blades.  Now that painful feeling has stopped but my mouth is always always dry.  I go NOWHERE without water.  I almost panic now because it was so terrible in the beginning of this whole mess.  It is such that I have to stop talking in the middle of conversations to wet my mouth.  I wake in the night about three times and my mouth is like sealed shut and is painful due to the dryness.  That is actually why I asked for the ANA test that I got my doctor to draw through her rolled eyes.  I had heard about Serena Williams and Sjorgens and when I read about the disease it discussed the mouth symptoms.  also my eyes are so dry it isn't funny.  But in thinking about things I know that my symptoms have been coming for a little over a year but certain times when I try and eat I cannot swallow but it doesn't feel as though it is a stomach or even esophagus issue it really feel like the "buck" stops in my mouth.  I know that when it hits my mouth if it is going to go down or not.  Just a thought! 

Well I don't know what is going to happen for me tomorrow. I hope it isn't another doctor with 4 minutes to spend to make $400 because I am about to lose my mind literally. I am approximately a month from being bald. I hurt all over and am stiff like the darn tin man from the wizard of oz and I am a tired that just is to darn hard to discribe right now because I am so nervous about tomrrow I just don't care to go into it. I have read a lot about Plaquenil and I hope that it is something I can take and if I can take it and I am given the change to take it that it really helps. My best friend is a female impersonator and he is on standby for me to take me wig shopping because I only have about a months worth of hair left at the rate it is coming out and God knows I wish I was exaggerating but I just am not. I sleep about 14 hours a day every other day and it is a tired that makes breathing hard to do. I don't know I just am so hopeful for tomorrow. Just think about swallowing being actually in your mouth and not anywhere else is all I actually wanted to say, appearantly I decided to whine for you too LOL sorry about that. I got put on this medication saragen (sp) you take it 4 times a day but it supposedly takes about 2 months to work for the mouth dryness pain ickiness thing I got going on that makes things hard to swallow. You might want to give it a mention to your doctor.

So, when I had my rheumatologist appointment on Oct 7th he said he is not convinced or actually leaning toward Lupus.  He was so kind and was very interested almost like I intrigued him.  Thank God, someone that didn't seem to be annoyed because I am sick.  I still didn't get any answers but I knew he was going to work on it.  He put me on some vitamins.  His secretary called me today...yup you read it right...she called me with results.  I almost fainted from the shock.  She said that this is it so far but he is quite perplexed now.  My vitamin D is very low only a 15 and it shouldnt be lower than a 50.  Also my calcium is low and I do not have a thyroid anymore so he wants to run an INI blood test to make sure my parathyroids are working ok.  But also my liver enzymes are elevated.  Since the surgery from hell on June 1st I have just simply gotten sicker and sicker.  When I got  a new GI doc he said he wanted to do a scope down my throat, which is difficult because on a gastric pt you can only see down so far, and also do a colonoscopy.  There is chatter amongst the doctors even the yucky uninterested ones thinking that something happened like a leak of some kind during the surgert.  The scope is a tool to hopefully find it.  I was scared because of the last time I got put to sleep for something I woke up and this whole nightmare began. 

I know this sounds weird though but if you work in a Dr office you know that the staff talk about people being pain med seekers or hypochondriacs and just people who love going to the doctor.  Or if we get their disability papers all kinds of things are said.  My PCP, surgeon, my original GI doc that cancelled this surg in Feb without explanation all treated me like I was annoying them.  Like when I was telling them how much pain I am in or that bizarre fatigue I have that was making driving hard  because I fell asleep at the wheel ALL the time.  When I asked for the ANA my dr rolled her eyes but then it came back positive.  So this is what I mean about weird, at least there are things showing up to validate and confirm what I am feeling and truly going through.  I have done some reading on all the things  his nurse talked to me about and it makes so much sense I cannot believe it.  I just recently almost died due to protein malnutrition (albumin) and that has a lot to do with vit D and cakcium.  I think the liver too but I can't remember.  The hairloss .....just so much.  I am scared to get hopeful.