Wednesday, September 19, 2012

Kind Of Like Swallowing A Whale

I have been having trouble swallowing for quite a while.  Sometimes it feels like I am trying to swallow a large rock when it is only a small bite of potatoes or something.  At times it is very scary because I am afraid of choking.  This condition is known as Oropharyngeal dysphagia.

The PubMed website states that “Oropharyngeal dysphagia is the term given to swallowing disorders.  They are commonly observed in multiple sclerosis (MS) patients. The complications of dysphagia are common causes of morbidity and death in late stages of MS. However, dysphagia in MS usually receives limited attention.” Most sites give this condition limited or no mention in their list of symptoms of MS.

The condition affects me on a daily basis.  It does not matter if I am trying to swallow something liquid or something solid, if the condition is active, I cannot make what I am trying to swallow go down.  Sometimes I just give up and try to eat or drink at a later time.  Like with many things I have experienced on my journey with MS, my doctor just shrugs and does not comment.

I was thinking that in a perfect world a doctor would not be allowed to practice in a field in which he has not had an experience with the condition.  In other words, if you don’t have a disease, you should not be considered “an expert” on that particular disease.  I know that is an unrealistic statement.  I do not wish any type of disease/ailment on anyone.  I do feel that if you have never had a cold you have no idea what one feels like.  I feel the same way with MS.

Although I have never heard of a neurologist that has MS practicing in my area, I am sure that there are some out there.  Those who have that person as a doctor would seem to me to be very fortunate.  He would have to have more patience and more understanding with off the wall symptoms than someone who has never gone through these things.

As those of us with MS know, it is hard to put your finger on a set list of things to expect with this disease.  No matter what any particular website, medical book or doctor may have, they do not have a full and complete list because there is none.  The MS community is a varied and multi-symptomed (My spell check says that is not a word, but it is now!!) group. 

Maybe we should find a site where we can all go and list our symptoms.  Each time a new one develops, we can add it.  The site would be set up to add the same ones together and make a list of all of them.  I wonder just how many there would be and how many are actually listed as MS symptoms.  I am sure that the medical community would not agree with all of them.

By the way, I was looking for a picture to put in this blog about swallowing.  Unfortunately, all the swallowing pictures seemed to be about snakes swallowing their prey…………no way I was putting that on!!!


Sherri said...

I have the same problem... swallowing. Or not swallowing, however you want to look at it LOL

I am afraid of choking and have to be very mindful when eating. That part may not be so bad.... I eat much slower so I get full faster... maybe I'll lose some weight out of this deal...

For me, there are times when it's very hard & painful to swallow. There are other times when I choke on my own flippin spit. It goes down the wrong tube. I hate that.

Muffie said...

My swallowing problems come and go. For me, it's like the area of my throat where I should be swallowing has moved, and I can't find it. Does that make sense? Maybe if it stayed, I could get really, really thin again -- back into my 2's!
I would never trust a doctor with symptoms like mine! Yikes! He'd be one spasm away from decapitating me! I'd call him a real jerk. Get it?
Hope you're feeling better soon!

Janie said...

I don't really want my doc to have my symptoms, just to not look at me like I am from Mars when I tell him about them.

I know what you mean about the spit, Sherri. Sometimes I seem to choke on air.

If eating slow would keep you thin, Muff, I would be back to my 3's and 4's! Unfortunately, getting NO exercise seems to be more of a problem than trying to eat right.