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I don't have achalasia after all

Posted , 3 users are following.

Gilcrm
Gilcrm

Diagnosed years ago and have had 2 barium swallows and 2dilitations

During last EGD they took a biopsy and it showed a large amount of white blood cells. It's an immune deficiency. I now take flovent inhalers twice daily, and swallow not breathe. Supposedly this can fix the problem.

Only thing I notice different is the severe chest pain I have started ha omg almost constantly. Went to ERand they gave me a gi co kraits which worked pretty good, a nitro and carafate.

Let's see what hppensz

0 likes, 6 replies

6 Replies

  • Nettie_Noo_Noo
    Nettie_Noo_Noo Gilcrm

    Posted

    Please forgive my ignorance but, are we talking about a GTN like spray that is used for angina?  I was given one of those in around 1993 to help with pain from the acid reflux, it didn’t work for me. At the moment I am suffering from severe chest pain, never had anything like it. My breathing is very effected, even talking for a period of time leaves me out of breath as I am very distended as wel.  I can only describe as being very heavily pregnant to the point that sitting straight for any length of time is hard work and, very, very uncomfortable. I can not physically bend at the waist and, is driving me insane. I have been prescribed morphine now which is helping but, as soon as I drink or, attempt to get something mushy down me the pain becomes very intense and, works itself down to my stomach. It takes about 30-40 minutes for this to subside even with the smallest amount of whatever I can manage to get down. My own personal experience prior to diagnosis was one of hell and, one that I will never forget. It definitely affected me emotionally as they really put me through the ringer for 3 yrs until a dr had a light bulb moment. It was a complete battle from being diagnosed with anxiety to having anorexia???? For a young lady of 19 or, for anybody it was distructive for anyone’s mind. Following this discussion I wonder if Achalasia was the new THING that drs were becoming aware of and, maybe going from one extreme to the other. I think there is a lot to be still learnt with Achalasia patients. Over the years I have been asked by Drs and, even surgical registrars that have looked at my previous surgery scars and, asked me what I’d had done, I’ve had to explain what Achalasia is and, how to spell it. I can recall on a couple of occasions where I have needed hospital treatment for other things and, we have sat there whilst drs have gathered and, discussed the Achalasia rather than what I was there for. Almost like a lab rat ha ha and, I wonder whether consultants maybe a little over zealous in diagnosing Achalasia now that there is so much more known about it. I guess all anyone can do like yourself is have the appropriate tests and, make sure you have a good gastroenterologist that is very familiar with the desease. Achalasia is an auto immune desease so maybe that’s why it’s confused with other motility disorders. I keep saying it but, The Manometry swallow study is the best test to confirm or, rule out Achalasia and, of course a barium swallow. I wish you well and, hope you get the right diagnosis which enables you to look forward x
    • Gilcrm
      Gilcrm Nettie_Noo_Noo

      Posted

      Nettie I am so sorry to hear about all your problems. That's terrible. I wish medicine was black and white but it's only full of greys.

      Eosinophilic esophagitis is what I may have. Hopefully the inhaler will work. The chest pain used to be only before I would regurgitate. But now it is constant and sent me to the ER. 

      The cocktail is lidocaine, Maloxx and Bentley. It helps temporarily. I started figuring out last night that dissolving carafate in juice and drinking that helps more and is a lot cheaper.

    • Nettie_Noo_Noo
      Nettie_Noo_Noo Gilcrm

      Posted

      Oh you poor thing, I can really relate as my chest pain is horrendous at the moment. Two weeks ago I was transferred straight to the hospital from my GPs surgery as they thought I was having a heart attack. My blood pressure is normally on the low side but, it was unusually low, I was out of breath just explaining to the Dr what was going on. Ever time I stood up I was just draining, then I start to shake uncontrollably which subsided after about 10 mins. They did 3 ECGs which were showing little wobbles but, my BP would fall like a stone then shoot through the roof. They did blood enzymes to check my heart and, fortunately they came back normal. They kept me in for two days for observation as my body temperature was low as well. The consultant who I saw on the Urgent  Care Unit said that because I am so distended it is putting pressure on my lungs. I’m at home now in my own nest where it is far more comfortable than the hospital but, in a lot of pain especially when I’ve tried to get something down me. I’ve been prescribed morphine which helps a lot but, I really don’t want to be relying on that every 4-6 hrs especially as I don’t see my surgeons until the 5th March. I have never heard of Carafate I will have a google and, get some information about it. It sounds like your having terrible spasms also, do you find it worse after drinking or, eating? Take care of yourself and, many thanks for the advice I will certainly look into it x
    • Nettie_Noo_Noo
      Nettie_Noo_Noo Gilcrm

      Posted

      I’ve just had a very brief look at carafate and, it’s possible side effects, my goodness it may cause many of the symptoms I already have going on ha ha. So maybe it’s something I could have a chat with my GP about though. There is always the possibility that it may help and, has to be better than morphine. Thanks again any advice is always welcome and, it’s good to know what else is available x
  • Nettie_Noo_Noo
    Nettie_Noo_Noo Gilcrm

    Posted

    Hi, a little personal maybe but, if I could ask. Does your abdomen swell as well x
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