Dysphagia

Has anyone experienced any issues with their swallowing function? I went to see an ENT specialist the other day and I’ve been told I have totally lost my gagging reflex and I have some abnormalities in my throat that shows I have swallowing dysfunctions. I know that something is wrong because I quite often struggle to swallow things including water and my throat goes into spasms. The doctor says I need to see a neurologist about it. I looked online what could be causing it and what I’ve seen so far is very scary, I’m really worried.

I have had a few issues with swallowing, but it was only transient so I don’t think they are the same as you describe.

For me there were other symptoms that suggested to me I had some inflammation maybe affecting the nerve.

One time I was on steroids at the time and also had a cold that seemed very mild to me but the stuff coming out of my nose looked pretty awful, even though there was only a tiny amount of it. So off I went to the GP wondering if I needed a referral to a neurologist, and he pointed out that it sounded like I had a sinus infection and we should fix that first, because maybe it was localising all my uncontrolled inflammation around my ENT area which might in turn be affecting the swallow nerve. He was right.

I’ve had what seems like nerve inflammation in that nerve a few other times too, (not trouble swallowing last time, strong pain like tonsillitis but deeper like a knife being stuck in your throat - and absolutely nothing to see in my throat).

I know that swallowing problems can lead to some scary places on Google. All you can do is go to the neurologist, and remember there are sometimes fairly innocuous reasons as well. My body seems to be able to localise inflammation literally anywhere, sometimes for only a couple of hours at a time! Whilst it makes quality of life pretty miserable, it doesn’t seem like major permanent damage is being done to most of me most of the time.

Big and gentle hugs and tell us how you go.

I started having issues with swallowing at random times. Then it progressed to actually choking, as in Heimlich maneuver choking. After that happened a few times, I scheduled an EGD, I’m fortunate enough to have a PCP that also performs minor procedures. I was dx with esophageal inflammation and gastroparesis. He dilated my esophagus which helped somewhat. I updated my rheumatologist at the next appointment, she said it was probably the methotrexate. I switched to the injectable form and all is now good. I take the same dose once a week. I occasionally have difficulty swallowing but nothing like before and no more choking. Another plus, the insurance has no copay for the injection. Best of luck to you.

That’s really interesting, about the possible connection between the pills and increased choking. I just restarted methotrexate after about ten years, and went straight to injections for other reasons, including the constant nausea I had on the pills.

I’m glad you’ve had some improvement at least.

It sounds like your doctor is being thorough in sending you to the neurologist. Googling symptoms can definitely take us to a pretty bad space, so if all it’s doing is raising your anxiety levels I would encourage you to wait until you see the doctor.

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Wow @Jonadila, I had absolutely no idea oral methotrexate could cause that, despite taking it and having swallowing issues myself! Thankyou so much for jumping in and letting us know, I think I might ask if I can switch next time - it’s supposed to be more effective anyway.

I’ve made an appointment for the neurologist, I have wait until Feb! Looking at some of the responses I’d like to add that I’ve never taken oral methotrexate, I have weekly injections. However my dad has Crohn’s disease, I’ve suspected I have Crohn’s disease too so I think my swallowing issues has something to do with that. I go to the hospital next week for Crohn’s related investigations so maybe my answers lie there.

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Interesting discussion…Its the first time ever its come up here. Nodulosis and resulting dysphagia from MTX is not uncommon about 6% -10% on patients on MTX experience Nodulosis although they are smaller nodules than usual and they do occur in the trachea. But the funny part (with PsA funny is the norm and all one can do is laugh at the alost daily wierdness.) is that the nodulosis generally only occurs when the other symptoms of PsA are under contol. Its almost like the immune system is asking “Did you forget about me”

The first time I noticed the nodules and pointed it out to my Rheumy, her reaction was “Wow! That’s Great News, I’m doing my job!!!” THEN she changed my Diagnosis.

I Ladies and gents no longer have PsA But before anyone gets excited for me, I now have “Rheumatoid arthritis involving multiple sites, unspecified rheumatoid factor presence” and all because of four little pimple sized lumps - two on each index finger. As result those lumps and the change of DX she was able to double the amount of Remicaid that Medicare and Diagnosis protocol allowed. (and thank goodness as it is $21,000.00 a month) BUT I now take half as much MTX which saves the insurance company a whopping $21.00 a month. I’m doing great other than fatigue which we are starting to work on though I suspect the biggest factor is 3 kids 18mos, 8 and 10. at 70 years old.

I would suay though if It caused swallowing issues I would not be near as thrilled. I think akaPixelChick that GI approach is wise, but aside from crohn’s (not uncommon with us folk) we also tend to have a lot of GERD that can cause swallowing most often from NSAIDs though Oral MTX can be a villain too. Good luck…

sadly we all get from time time to time a doc who is looking for extreme maladies when the answer is pretty simple. Our disease is systemic inflammation. I have learned if nothing eles to not get two excited when something goes horsechit. (Okay the stroke was an exception…)

Congratulations? Actually, congratulations are in order if it’s getting your disease process under better control.

Well, I suspect that your diagnosis isn’t finished yet! Wouldn’t RA be typically found through your blood work? When necessary, my rheumy says I have systemic inflammatory disease with a psoriatic variant. …go figure! But I do hope that the increased meds are a good fit for you…your lively family life needs you!

We have pretty much the same thing then… Things have changed over the years. I had a negative HCA8 years ago so I couldn’t possibly have Ankylosing Spondylitis. You don’t hear about HCA8 anymore. Turns out lots folks were positive and didn’t have AS. They had trouble explaining folks like me who had clear ankylosis. Sooooo they changed the rules. I guess my point in all of this is the importance of keeping your Rheumy in the loop always. These days if I need a referral I start with them. Too many specialists is not a good thing. If you are wondering if it’s PsA related, it probably is.

Oh BTW they want to change PsA to Seronegative polyarthropathy with psoriasis. Which technically it is.

Great now its: SPwP? :slight_smile: I’ll print new t’shirts!

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Nah it’s work around for the insurance business in the US. The only way to get what folks need is to keep them confused… at least you get my sense of humor…

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Amos I’ve been running around with seronegative Rheumatoid for years for the same reason. Now my gastro has even sent me to a new Rheumy he teams up with so when we run out of approved gut drugs (one left), the Rheumy can give me “Rheumatoid Arthrits” drugs for my gut :joy:. What t-shirt do you reckon I should get? :joy:

For you @jen75, just question marks that go all around the shirt! Maybe like this: ???now what???

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Somewhere in my drawers (not those drawers!!!) I think I might have an original mood ring that changes colour. Maybe it can be used as a warning 10 minutes before a flare hits. @tntlamb might be able to explain one of the studies done that validate this. It would sure simplify all the diagnostic guess work!

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@Amos that made me belly laugh out loud :joy::rofl::joy::rofl::joy::rofl: thank you :joy::rofl:

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