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Plummer-Vinson syndrome

Posted , 6 users are following.

bookgirl5
bookgirl5

Is anyone familiar with Plummer-Vinson syndrome? I had dysphasia (difficulty a swallowing) due to low iron levels - along with burning mouth, restless legs, heart palpitations, shortness of breath and so on. I'm wondering how long to take iron. Taken it for almost a year. Doctors don't seem to acknowledge the dysphagia and iron connection so I'm having trouble getting info since supposedly this is rare. Anyway I was just wondering if anyone else was getting care for this syndrome. My doctor has no problem with me continuing to take iron but I was curious if there was anyone who had this diagnosis?

1 like, 10 replies

10 Replies

  • r.84713
    r.84713 bookgirl5

    Posted

    Hello bookgirl5,

    do you still have the problems? Especially the dysphagia? I have to admit, I'm a bit excited / nervous right now, cause I've never talked to a person I guess in my whole life, who (probably) experienced (or is experiencing) the same or something similar as I did for over 26 (!) years... (nearly the whole time undiagnosed..!)

    I have not had the other symptomes (burning mouth, restless legs a.s.o.) you described, but my whole childhood, youth and pretty much of a decade of my 'adulthood' I suffered a pretty hard deal from a (almost severe, and mostly undiagnosed) dysphagia, especially form solid foods, which was nearly traumatic (hell), especially countlessly on public occasions... (food stuck in throat and won't go up or down for sometimes nearly an hour, whch was nearly insane...).

    But in my case, there are, I would say, some indications, that would indicate a connection pretty close to numerous iron deficiency anemia-symptoms..

    As far as I know, the Plummer-Vinson-Syndrome in many cases causes a (so called) (upper) esophageal web to grow (so in my case... that was, what I was suffering of nearly my whole life), which as far as I'm concerned normally or in nearly a lot of cases leads to the swallowing difficulties, the Dysphagia...

    At the age of 19, by nearly total coincidence (!), I firstly had my swallowing difficulties diagnosed ('upper esophageal web'wink via endoscopy, and firstly treated at the same occasion ('dilation'wink...

    Have you ever had an endoscopy..?

    (I would love to hear from you...! in any case good luck and all the best..!!)

    Greets R.

    • bookgirl5
      bookgirl5 r.84713

      Posted

      Wow, I had given up ever hearing anything on this syndrome. I haven't had anymore difficulties and find it amazing that a little iron pill solved this problem. In did have an upper endoscopy which found nothing. I did a barium swallow and the pillnthey Have you swallow wouldn't go down so they had me chase it with graham cracker which resulted in a dramatic choking event. She thought she saw something but the doctors wouldnt do the upper endoscopy again so I was thinking I had to go the rest of my life not enjoying food. I can't imagine you suffering soblong with this. The only plus was losing 20 pounds which came back right after in was able to eat normal again. It says it is caused by long term anemia and I had a huge blood loss and wasn't instructed much about taking iron and only took half a bottle afterwards. I had heavy periods after (I'm assuming you're a woman - haha. Otherwise TMI) and three months later I got pregnant at 41 and was extremely tired the whole time but I thought it was because I was old and pregnant. So I think it was because of all these things that it got so severe. I decided to go back to the GP after being dizzy and not feeling well and asked him to check my iron and it was at 2 and blood levels at 7.8 I think. There is one site that lists dysphagia as a symptom of anemia otherwise if looked up together Plummer-Vinsen syndrome comes up. I also fit the profile except one.site made it sound really rare - typically only in Africa - lol. Are you doing well since they figured it out? It does cause the webs and evidently mine couldn't be detected at the time.

  • lindsey65522
    lindsey65522 bookgirl5

    Posted

    Hi

    I think i have this problem, i have had this for a few weeks and have seen my gp who said my throat looked fine, but i am animic and i stopped taking my iron tablets as they made me sick, i have started taking them again this week but the feeling in my tongue is still the same, feels like i am trying to swollow a lump, my tongue at the back feels sore and not sure if any skin broken, i did last week have a brownish stain on my tongue which seems to have gone now,

    I really would appreciate any advice

    best wishes

    • bookgirl5
      bookgirl5 lindsey65522

      Posted

      I somehow missed this post. Are you dong any better? I had some mouth issues. My gums were bright red and lots of things burned my whole mouth. I'm considering stopping iron. It's been 2 years and I'm not sure if I should still be taking it but it fixed so many things I'm afraid not to. I hope you are feeling better.

  • rosie37005
    rosie37005 bookgirl5

    Posted

    Hi I was diagnosed with this condition in 2009 at that time it was almost impossible to eat I had the webbing which had almost closed of my oesophagus drinking was also a problem I didn’t have to eat to choke my throat used to lock  off by its self and I would be in a state not able to get this lump down for ages I had two ops in 2010 /2011to remove webbing and they stretched my throat but no total cure for me I’m afraid they could not remove all the webbing I was left with a lot of stenosis ( scar tissue) and my throat is very narrow so my diet is very soft but I’m very grateful to my specialist who I see every few months  because he thinks my ops will need to be done again but for me the hardest thing was thinking I was the only one with this condition 

    • bookgirl5
      bookgirl5 rosie37005

      Posted

      rosie, That sounds painful. So did you start taking iron? The webbing didn't get that severe in my case since after the barium swallow they only thought they saw something. And then shortly after i started taking iron for the anemia and it went away. I thought iron was what fixed this condition? I didn't realize that the syndrome might require surgery to remove the webbing.

    • rosie37005
      rosie37005 bookgirl5

      Posted

      I was miss diagnosed for nearly 30 years my doctor kept telling me that I was imagining it or I was anxious and stressed and that was why it was happening but I knew something was badly wrong my iron was low because I couldn’t eat but it not proven that iron causes this there is new research that says it’s now believed to be hereditary I have now been diagnosed with more webbing growing round in a ring this time swallowing is difficult and I need more surgery I believe my is as severe because no one picked up on the condition because it is rare the hardest thing is not being able to talk to others with the same thing
  • marla57945
    marla57945 bookgirl5

    Posted

    Hi,

    I just found out I have PVS.  5 1/2 years, 71 doctors, and I had to research to find out.  Mine not only involves the dysphasia, but I lost 50% of my hearing, sores in mouth and vagina, spooning nails, swollen knees, difficulty breathing, etc.  I just found out about the iron deficiency, but I can't find anywhere how much to take.  Also, I found out it started with Lyme's disease and has progressed to Hashimotos as well.  I also read that there could be a B12 deficiency as well.  Not sure what to do next, just found this out in the last week.  My newest ear doctor said I had Medial 1/3 external auditory stenosis, I did the research myself and found out about the Plummer Vinson.  Any suggestions is appreciated.

    • rosie37005
      rosie37005 marla57945

      Posted

      You need to have a blood test to determine your iron level and your doctor will prescribe it if it is needed
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