Could this be Achalasia?

[Guest guest]

To the Achalasia and GERD Groups,

I am a frequent lurker to the GERD board since my wife suffers from it. A recent post there I have copied/pasted below for the Achalasia group (and in honor of Ann, in her trademark lilac color).

This woman has a lot of problems, and at first, I was not sure where she was going, but then it focused on her condition. It sounds as if there is a possiblity that it could be Achalasia with doctors not familiar with the disease, but I'm not sure.

If anyone wants to share an opinion, or posts suggestions to her, I am going to send her a direct email and ask her to check out our "Achalasia" site.

Hi,I have recently joined this group and thought I would introduce myself and see if anyone here can offer me any advice on where I should go from here.I'm a 32 year old mother of 6 children aged 10,8,7,5,13 months & 10 weeks. There is a strong family history of severe reflux in my family with my father having had a nissens fundoplication, my brother has relux and all 6 of my children have been diagnosed with reflux in varying degrees. Two of my children have had a fundoplication and my 10 year old has a gastrostomy and has had all his nutritional needs met through that for the past 7 years. Two of them have dysphagia , in one child this is due to a suspected abberant subclavian artery. There is also sleep apnea present with 3 children being affected, with one (the 10 year old) being ventilated at night with a APAP. I also had a stillborn baby 12 years ago for unknown reasons. It was only when my 13 month old daughter was born that the Drs finally agreed there must be (an unknown) genetic problem. By this time I was already pregnant with my newborn baby. Obviously there will be no more children :(In all the years of struggling with reflux with my children I never thought in a million years that I would get reflux myself. My mum said I must have had it as a baby but I thought I must have been lucky and escaped with a mild form. Then a few years ago I started developing heartburn etc. This rapidly escalated so I was having to sleep almost upright or else I would wake up choking and in severe pain. I would suddenly choke in the day on things that had refluxed up. I don't smoke, drink alcohol or tea/coffee - water is my only drink. I cut out anything acidic from my diet and hardly eat greasy or fatty stuff anyway. Then a year ago I developed swallowing problems. This started with difficulty swallowing stuff like meat and bread and gradually worsened so most things are difficult to swallow now. In the pregnancy I was always starving so ate even though I would suffer for hours afterwards from chest pain and the feeling of food being stuck, but I was so hungry I didn't care. Also I knew I had to give my baby nutrition and was terrified because she was small on the scans. She was born weighing 6lbs 12oz and was in ITU for 10 days.Since my babies birth 10 weeks ago I don't feel starving hungry all the time - in fact my appetite has gone completely and so the desire to eat just isn't there anymore. After struggling for so long with food all the pleasure of eating has gone. My main nutrition in pregnancy was from ensure plus although I was still taking in less than 1200 calories a day. Now as well as the rapid decline in eating I haven't been drinking the ensure either. It takes a few swallows now to empty liquid from my mouth and ensure is sickly after a while.I have lost a massive amount of weight since my babies birth 10 weeks ago - 42 pounds - obviously I have had a baby and 14 pounds of that was in the first 2 weeks following the birth but even so I know its a lot of weight loss for having a 6 lb 12 baby. All of my pre-preganacy clothes are huge on me. The weight loss had stalled over the past few weeks but I have started dropping again with a loss of 6 lb in as many days.I realize this is not a good thing for my body as I have only just had a complicated major surgery and my nutritional status has not been good for at least 18 months. I have needed blood transfusions twice in the last year for severe anemia.I feel bad all the time - tired, feeling sick and now the most terrible crippling headache. I eat when I feel lightheaded but I am forcing mysef to eat and wonder if that just makes things worse. The sickness feeling doesn't help either. I am not managing to get over 500 calories a day and I know that is no good at all. My husband is desperately worried that I will collapse and die. I think he is exaggerating somewhat but I know this cannot go on without eventually having some serious consequences.The dietician at the hospital said last week that it is at a serious point and I will end up in hospital very ill soon if things don't improve. She said that the next step will be tube feeding and that if I can't stop losing weight there will be no other alternative - since then i have dropped 6 lbs so I'm very worried !The doctor i saw said I need to make more effort to eat because there isn't any reason why I cant swallow enough to be able to maintain nutrition. Obviously he is right because I could drink more ensure. He didn't seem to understand that its not just physical any more but also I don't make as much effort as there is the reduction in appetite now I haven't got a baby feeding off me ! and because of the length of time its been going on food now just = pain/struggle and drink = difficulty/reflux. I have tried and struggled for so long now and I guess have just given up with it. But Ii have a family whom I am responsible for. As hard as I try I am really getting nowhere and things seem to be sliding downhill fast.My husband thinks the dietician is right and I should ask them to commence tube feeding. It seems a bit drastic and in theory it should be unnecessary. However I am terrified that my body is being damaged and do want to live and have proper nutrition and if that is the way I can get it then maybe I should. The idea of having a tube put down makes me feel like i am a pathetic failure for not being able to get enough nutrition myself. I don't get to see the Dr until August but the dietician doesn't think i will make it that long.I have had a gastroscope where they couldn't see a obstruction. I had a barium swallow a few weeks ago and they said they found something but didn't know what, could be something or nothing. They took pictures 4 times but couldn't see clearer and are putting in their report that there is a suspicious area - he said it could be a air bubble. I am due to have a ph study and manometry. The dr I saw thinks I have reflux and oesphagul muscle spasm. I have been on Lansoprozole for over a year at 60mg dose and have been given domperidone 3 times a day.Any advice on what I should do is appreciatedWindsong