Lost and Confused about Achalasia

I am sorry to hear you are going thru the process of diagnosis and deciding on your treatment.  It can be a frustrating and difficult time.  To give you some encouragement I will tell you that I have had Achalasia for almost 25 years and only had 1 procedure done back then.  It is true, that current research indicates that there is an autoimmune component to our disease.  We attack the nerves of our own esophagus, just as MS attacks the insulation around nerves in the body and just like Rheumatiod Arthritis attacks the body's own joints.  But I have not yet heard of any treatment that will stop the attack.  The damage done is permanent so whether or not they can prevent more damage doesn't change the fact that you cannot eat well in your current state.  So that needs to be fixed.   I would advise you to seek the best Gastroenterologist in your area, look them up to see if they have a lot of experience with Achalasia.  The success rates of the surgeries are much higher once a surgeon has done 50+ procedures.  There is an art to getting it just right, which comes with experience.  While you can certainly investigate whether a rheumatologist can do anything to prevent future decline, I would proceed RIGHT NOW with finding a good Gastro team to address the existing damage and decide whether you should have a POEM or Heller Myotomy.  Repeated dilations are not a good idea as they are not thought to be long-term successful and can stretch things out causing difficulty in getting a good result from POEM or Myotomy.  Hope this helps.  Stay positive and know that while many of us have "issues" our whole life, most of us manage quite well after having a procedure.

I have managed my symptoms for over 30yrs going for first dilation on Friday. Dr says it may take a few I am petrified will keep you informed

for what it s worth i was diagnosed recently. I had POEM a week ago last friday. I have read a lot of postes about our disoirder and i have noted one thing if you are opting for POEM it seems to be better to do it first almost every failure i have read regarding POEM is from people who opted for treatment with Botox or balloon dialiation. The thing with POEM is that having the surgery does not preclude other treatments such as botox or baloon dilation however if you have those first it may make a POEM ot Heller Mytomy either impossible or ineffective.

As far as the autoimmune part of this disease there is reaeeartch being done and it most likely is an autoimmune disorder however there are no proven or experiemental treatments that a Rheumatologist could prescribe, it would be a shot in the dark. I suppose they could use one the drugs they are using on Crohns disease however i dont think any insurance company would cover an infusion drug like that and am not sre it would be effective.  

I guess for me i knew going in for the surgery it was a treatment not a cure but that it would buy me time while we search for a cure. 

I wish you luck!

Best

a

Also this is where I got the information that is is autoimmune 

Mysterious esophagus disease is autoimmune after all ...https://www.sciencedaily.com/releases/2014/07/140729073644.htm.

it's from July 2014 in sciene daily.  Well it confirn it's autoimmue in orgin.  Anyhow I guess what I am looking something not to fix the symptoms but something to prevents, slowdown, reverse the damage.  I am sure that is what ever body with a disease wants.  I also have Secondary Progressive MS and  there is only ONE unsafe treatment for it.  Most People don't release there are 4 types or stages of MS and I'm at number 3. There are meds for relapsing MS but I am beyond that.  The can only treat the symptoms.  My main symptom is it is eating away at optic nerve and there is no meds for that.  So when I was told dysphagia, that is neurological, and achalasia is neurological but neither are MS so I always ends up going around and around saying there is something more going on with my immune system and you need to do more than just MRI"s.  

Everyone's outcome is different, but I sympathize.  I was pregnant when my syptoms appeared.  Fortunately, I was under good care.  Since they didn't know for sure what was going on and couldn't do testing procedures or anything until my daughter was born, I ended up with a J-tube feeding.  After she was born, I had a dilitation, which lasted about 5 months, but they try the least invasive procedure first...  Then I had a heller myotomy.  I have been stable for 12 years since.  I have barium swallow studies and EGDs every 3-5 years to verify, but haven't had much change.  So while this diagnosis isn't great, there are more people that are relatively stable, than have major troubles.  Iwent through Mayo Clinics and they were fantastic and very knowledgable.  Please continue looking for a doctor who knows what they are doing in your area.  You will find someone and they will be able to help.  I promise and good luck.

I know this was 3 months ago but saw your post today and remember the frustration of similar symptoms with months of misdiagnosis. I was diagnosed correctly with Achalasia and given a Laproscopic Heller Myotomy surgery after seeing 2 different gastroenterologists and even a sleep specialist because it started with waking up coughing and choking on food that came up in my sleep. I was diagnosed after getting to a point where I couldn't even hold down drinking water and at that point had lost 65-70 pounds & went to the ER & had an esophageal scope.

After the scope I had a few more tests done was diagnosed officially and had my surgery with Dr. Joseph Houda in Dayton, OH. He specialized in this surgery and with Achalasia. I live in Dayton myself so this was convenient for me. He said himself that everyone reacts differently to this surgery and it can be required to have it done again. Having said that with the exception of a handful one time issues where I ate too quickly and regurgitated something I ate or I ate too much and had some tightness or pain in my chest or abdomen it's been a complete change for me. I told him about this website and told him I'd recommend him whenever possible. I know you said you're in Florida. I hope there's someone just as good there but if you haven't found one I know airlines like Allegiant or Frontier offer cheap flights to this area.

It's been a little over 2 years since my surgery and I've had no frequent issues return.