Lump-In-Throat Sensation

[jasonjuul]

Hello, 

  My apologies for veering from a pure AP discussion but I'm getting desperate for answers. My fifteen-year old daughter, who has been coping with her Mixed Connective Tissue Disease for 7 or 8 years, has recently been experiencing only what can be described as a sensation of having a lump in her throat. She had a bout of this a month or so ago and it got so bad (and she got so upset) that I ended up taking her to the emergency room of our local hospital. They didn't find anything unfortunately but I wasn't too optimistic they would. Although going to the ER and being checked out brought my daughter great comfort so it was worth the effort of going.

  This weekend she experienced the same sensation on several occasions. She also says she has been experiencing a burning feeling sometimes in her throat which she thinks is acid reflux. I've alerted her Pediatric Rheumatologist but he is so far being conservative in treating this problem, prescribing biofeedback and stress reduction for the anxiety my daughter is experiencing over this. We see him in a couple of weeks at which time we will press him more for answers.

  Meanwhile, I was wondering if any of you have had the lump-in-throat sensation and/or the burning feeling, and if so, were you able to ascertain the cause and find appropriate treatment or relief.

  Thank you so much for any help or advice you can provide.

Sincerely,
John M.

[Maz]

[user=1157]jasonjuul[/user] wrote:

My fifteen-year old daughter, who has been coping with her Mixed Connective Tissue Disease for 7 or 8 years, has recently been experiencing only what can be described as a sensation of having a lump in her throat. She had a bout of this a month or so ago and it got so bad (and she got so upset) that I ended up taking her to the emergency room of our local hospital. They didn't find anything unfortunately but I wasn't too optimistic they would. Although going to the ER and being checked out brought my daughter great comfort so it was worth the effort of going.

Hi John,

Can you share what meds your daughter is taking in your sig line? This can help quite a bit in terms of generating responses.

There's so many things that can cause that type of sensation…reflux, for sure, but also swollen glands (and infections like mumps, mono, etc), thyroid nodules pressing on the esophagus (AI thyroid disease common as an overlap in rheumatid diseases – hyperfunctioning nodules can occur even if euthyroid), allergies or reactions to foods or drugs, etc.

It's good that you've had her throat checked out (was she scoped at the hospital?), but you may need to run through a process of elimination to rule things out.

Hope your daughter is doing well otherwise….is she still seeing Dr. E in Northampton or did you decide against AP in the end?

Peace, Maz

[jasonjuul]

Hello Maz,

  Rachael is taking Cellcept, 2.5g 2x/day. That's her only med. Her pulmonary function tests stabilized so we were loath to tip the apple cart so to speak, so no, she is not on AP. We saw Dr. E. about 6 months ago and he was supportive of staying the course.

  They didn't scope her at the ER visit; just did an X-Ray. Since she started feeling better and the X-rays didn't reveal anything, they discharged us. We followed up with the Ped. Rheum. and everything was fine for a month or so until this weekend.

  Overall Rachael is doing really well. With the warm weather, even her Raynauds has been held at bay. We just have to figure out what's going on with her throat.

  Thanks for the great suggestions Maz. I will be sure to ask her Ped. Rheum. about some of these on her next visit.

  I will be sure to follow-up with anything we learn in the next few weeks.

Sincerely,
John M.

[Parisa]

This is a little from the left field.  I swear a while back while I was crusing an anemia board that the sensation of a lump in the throat was a symptom of either low hemogloblin or ferritin.  I wish I could find it again but nothing has come up when I looked right now and I'm sure that if you mention it to a doctor they'll look at you like you're crazy.  However, if your daughter hasn't had a CBC done recently you might get her hemoglobin and ferritin levels checked.

[Maz]

[user=1157]jasonjuul[/user] wrote:

  Rachael is taking Cellcept, 2.5g 2x/day. That's her only med. Her pulmonary function tests stabilized so we were loath to tip the apple cart so to speak, so no, she is not on AP. We saw Dr. E. about 6 months ago and he was supportive of staying the course.  

 

Hi John,

Well, I know you research everything pretty thoroughly, as the caring Dad you are, but if this helps, here is a link to Cellcept, which lists a side-effect as being increased susceptibility of infections and sore throat.

http://www.netdoctor.co.uk/medicines/100000486.html

It could just be reflux, but having been a strep throat sufferer in my younger years, the lump in the throat sensation is something I've experienced with that and also passing viral infections. So, could be something like this, too, and she may just be more prone to these with suppressed immune function.

Cellcept is a pretty powerful drug, used in folk who have organ transplants to prevent rejection. One of the warnings is to be careful not to get any of the medication on the skin or near the eyes, which says quite a bit about its potency. This isn't to worry you…just that if she does have reflux, then if the medication is coming back up into her esophagus, it may be irritating her throat.

Do hope you can figure this out, John, and her discomfort can be relieved soon.

Peace, Maz

[Cheryl F]

John,

As her diagnosis is MCTD, which commonly overlaps Scleroderma, I would ask her doctor to order a barium swallow test to assess the function of her esophagus.

Cheryl

[carries]

Hi John! I did have that horrible lump in the throat feeling…..so aggravating and annoying….for months and months….I want to say about 6mths. I tried sucrafalate….it helped a little….I tried nexium….no help….i tried another one cannot remember name of it but it was no help…..then my dr put me on rantidine….ahhhhhhhhhhh finally it is gone! It was so annoying. I feel for your daughter. I still continue to take it as preventive measures. But maybe you could try that. I take it in the morning and night. Rantidine is the samething as zantac if i am not mistaken.

[carries]

Oh, and the rantidine took a couple of weeks…..(could of been my throat healing from all the acid….the dr explained this to me but of course didnt understand it so i immediately shut down and only get bits and pieces of his explanation…..needless to say though it is gone) I would try that…plus the rantidine will coat her stomache when taking her cellcept. Just have to make sure you can take that with it or if it has to be spaced apart. Just a thought you can ask your dr.

I was to the point i was going to do the scope thing….then he suggested i try one more thing the rantidine..and i did and I am good to go. I did take it with the sucrafalate for a couple of weeks then I stopped the sucrafalate and now just take the rantidine. Works wonderfully!!!

[richie]

Hi—While Maz is right that it could be most anything —I would think the burning is reflux and the lump could certainly be swallowing issues —the swallowing issue can easily be proved by an easy non –invasive test —-These are two very common symptoms of scleroderma —MCTD by definition is symptoms of various connective tissue diseases and these are rather common symptoms —-I have written in the past that some rheumatologists take on way too much —IF its  reflux that requires an internist or gastro enterologist –I thank a swallowing test can be given by the same specialities –a rheumatologist who tries to treat  these symptoms is way over the line in my opinion —- When I was sick I figured the best way to combat the illness was to have a rheumy for the overall disease of scleroderma  and have an internist to over see many of the other symptoms –glad to say my approach worked just fine —

richie

[jasonjuul]

Hello All,

  First off, I really appreciate the responses to my plea for assistance and the great suggestions.  Rachael and my wife and I have been losing a lot of sleep from the throat issue and the concomitant worry.

  One other facet to this recent issue is that the lump-in-throat sensation seems to always peak at night time although she does periodically complain of the sensation during the day.

  When we see the Pediatric Rheumatologist in a couple of weeks, I will be sure to press him to address this problem. I like the idea of bringing other specialists into the team, although in all fairness to our Dr., he does work with a Pulmonologist and Cardiologist on Rachael's case.

  I'll be sure to update everyone with anything learned in the next few weeks.

Thanks,
John M.

 

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