Esophogeal Dysphasia

[hobbit]

Really long story short, since Sept 1st I have not been able to swallow anything but liquids, after rounds of bloodwork, EKG's and an EGD my neurologist was able to conclude the above diagnosis. I can occasionally swallow something more solid for a couple of tiny bites before my throat closes. Then I cross my fingers and hope whatever I'm eating will get into my stomach and not stay stuck in my esophagus. My meds are playing havoc on me because of these issues and timing of them is crucial.

My doc tells me to be patient and lets see what happens. My stomach is shrinking, depression is running rampant and now I have holidays to contend with. I'm so hungry and I can't eat enough to feel full.

I don't know what to do anymore, or even how to explain this to anyone. Grocery shopping is torture, cooking for my family is torture, even watching food shows are torture.

I really have no questions, other than am I alone? Thanks for the opportunity to rant. Nobody else seems to understand.

[22cyclist]

You need to see a speech therapist who can do a modified swallow study and see exactly where your problems are.

I have this same problem. The speech therapist has helped me learn maneuvers and strengthening exercises that allow me to swallow soft foods.

Don't just accept the diagnosis, you can do something about it.

Feel better.
Lisa

[mjan]

OH I am so sorry ! Of course you are depressed..geez!!Have they done another MRI?
I question whether you could have lesions on the brainstem???
Is your doc an MS specialist?

Advocate for yourself. This is more than speech issues, IMHO. Good luck. I will be thinking of you. Let us know how you are doing okay?

Hugs, Jan

[hobbit]

What else can be done?

I have seen a speech specialist, muscles seem okay in throat except I no longer have a gag reflex, muscles are weak in the esophagus. They gave me exercises to do but pointed out it probably wouldn't help with my issues. My nerves are not responding to food stimuli.

The MRI I had did not show anything new from last years, which really doesn't help me much. My neurologist has maybe 5 MS patients, he believes either the MRI didn't pick up on a new lesion or it's old damage. He is however a great pill pusher, my ringtone for him is "It's you're drug dealer" lol.

I honestly think the only reason I'm still alive is my daughter (26 yrs.) has been making gallons and gallons of soup (I'm allergic to tin so canned soups are out of the question). The depression has been the hardest part of all this, I'm a great cook and I have people lining up to buy my baked goods, all of which I can't eat. With the holidays looming, I just want to crawl under a rock.

Doing research on this, kind of spooked me when one article claimed this condition to be an "end-stage" of MS. What does that mean???? My entire family, including myself have brushed up on the heimlich.

Hugs to all,
Anna

[mjan]

OH Anna, this is unacceptable!

Not to scare you, but has the notion of NMO been considered? Again, brainstem lesion issues in both NMO and MS can should be considered as I understand. Do you have any vision issues? Vomiting issues? Sometimes the lesions don't show up right away.

DEMAND, another opinion soon!! Then there is Mayo clinic. Not being able to swallow, eat is crucial..geez.

Keep us informed hon~

Warmly, Jan

[kellygrn]

Esphogus spasms

I have periods when the entire throat clamps shut. Scary. I have been on a soft mechanical diet for years. Everything is the consistency of junior baby food.

Meds have been changed to capsules that go down without getting stuck. Peanut butter with meds inside makes it easier to go down. You know how you give a dog his meds? Do that for yourself.

The next thing for me is feeding tube but doc is waiting for another round of aspiration pneumonia to do that. For me 1 round is enough.

Speech therapy did nothing for me. So find away to make life easy. Google the diet I mentioned above. Buy a food processor & a stick blender. You can have the foods everyone else is eating just in a different form.

Email me if you want to talk.

KK

[22cyclist]

I blend most of my food in a juicer. It makes hot or cold food. Lots of smoothies, a bit thick so I can swallow them as I choke on water too.

Sorry the speech therapist couldn't help. It does sound as if you have a bulbar or pseudobulbar palsy with no gag reflexes. Brainstem lesions can be very small and hard to pick up on MRI. One of mine was so tiny they questioned it, but it caused so many symptoms that the neurologist just decided it was in fact a lesion.

Be sure they are doing a 3T MRI. I have too been offered a feeding tube at times. Don't want one.

Keep fighting!
Lisa

[alastria]

esophageal issues

I have esophageal spasms and have been given diltiazem and several other heart medications (meds that relax smooth muscle) - have you tried one of these. See a GI doc and go for a manimetric study on exactly where the swallowing problem is.

Don't give up. I still have days when I eat mush but most days, I am able to eat normally but more slowly.

The GI doc was the one to put it all together. Yes caused by MS but treated by GI. Just a thought.

[hobbit]

In reply

Mjan: I am legally blind, I have chronic ON, I've asked my neuro and neuro-opthalmologist about NMO and have been told by both that I have MS, no doubt.

kellygrn: Thank you for the email offer I might take you up on that , it's good to know I'm not alone, everything I eat is consistancy of baby food on a good day, looser on bad days. Almost 3 months of this now, my neuro hasn't talked about a feeding tube yet I think he's saving that for my January visit. Something else I don't want.....

22cyclist: I am honestly getting tired of fighting, and explaining and the pity I see in everyone's eyes.

alastria: I have seen a GI and he told me MS see your neuro, it's almost like MS is the flag word, once someone hears that they send me back to a neurologist. If I had a nickel everytime I've heard that......., I take baclofen and diazapam for spasms, but they do nothing for this.

Thanks for the input everyone, just for the record I hate holidays

[alastria]

No baclofen and diazepam won't touch this.

I'm talking about diltiazem and cardezem. Ask them to let you try a small dose. What a difference it can make. And it's not a severe drug - short half life.

I know what you mean - no one likes it when you have problems related to MS but that fall within their field. ARgh. Hard to always advocate. I would call and ask for manimetric study. Isolate the dysfunction of the esophagus.

Hugs.