Just diagnosed with EOE: Hi everyone! I... - Functional Neurol...

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Just diagnosed with EOE

LEEJUNFAN profile image
7 Replies

Hi everyone!

I have FND and a few months ago I

wrote on here about my throat symptoms

such as difficulty swallowing.

After having a Gastroscopy done last month,

my results have come back positive in

relation to me having the following:

Eosinophilic Esophagitis.

It's an allergic /immune condition which involves inflammation and swelling

of the Oesophagus.

Now I've got to go through allergy testing for

various foods etc because when I'm now eating food my throat gives me problems.

It's a chronic lifelong condition which at it's worst can end up with me having to feed myself through a pump into my stomach

via a special formula diet.

What with my FND, this is the last thing

I would have wanted and I'm at my witts end.

Food is my only enjoyment and now this is affected as well!

Sorry to go on but has anyone on this site

been diagnosed or know anyone who has?

How have they progressed?

Any help would be appreciated.

Many thanks.

Best wishes to you all.

Kim x

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LEEJUNFAN profile image
LEEJUNFAN
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7 Replies
Rachh8 profile image
Rachh8

Hi Kim, I don't have this but I do have immune problems with FND. Wonder if you would look up my post on FND and adrenals as the adrenal keep the immune system under check as well. Just a theory I have at the moment which is very interesting. Hope you feel better soon x 

LEEJUNFAN profile image
LEEJUNFAN in reply toRachh8

Hi there!

Thank you for your reply.

I'll check it out.

Best Wishes to you.

x

cathys20 profile image
cathys20

Good Morning Kim, I am so sorry to hear of swallowing problems, it is frightening to say the least.  As I have said before I have been diagnosed with paroxysmal dyatonia, spasmodic dysphonia, but I fit into most of what is written on this board.  The last 6 months I have suffered with difficulty swallowing for extended periods of time, it is horrible.  My mother suffered many strokes one of which caused her to not be able to swallow, and yes she had a feeding tube for the rest of her life.  She ended up living with us for the last 6 months and I would crush her pills and take care of her from that time forward.  I think knowing all she went through scares me the most when I think of this.  You are definitely in my thoughts and prayers.  God Bless, Cathy

angelite profile image
angelite

I'm so sorry to hear this, Kim,

I suppose in one way it is a comfort to have had your issue medically acknowledged, rather than put down to FND with no care plan. I do get swallowing/throat pain issues, I think to do with GERD episodes and acid reflux causing raw throat/ inflammation/swelling. It is v. uncomfortable and unpleasant.

Sending best wishes,

Angela x

hathi999 profile image
hathi999

I had exactly this, you aren't alone. I posted a youtube video on it "Cure for Swallowing Difficulties, if food gets stuck in your throat", the solution was methyl B12 vitamins, look them up, they resolved this problem entirely for me in just a couple of weeks in early 2016, I am free of all problems now, you might find you have a sensitivity to gluten or just wheat, this often stops the absorption of B12 from your food.  I thought I had Eosinophilic Esophagitis and I posted about it on my blog.  

LEEJUNFAN profile image
LEEJUNFAN

Hi Hathi

Thank you for your response.

I should be having allergy testing done soon by my GP.

My consultant has actually diagnosed me with EOE as my white blood cell was over 30 which is high and this is what they go on to diagnose this condition.

My B12 has been tested before which was ok but I may have another done.

My consultant doesn't want me tested for allergies so he's given me the inhaler to breath into and swallow.

My GP will be testing for dust and grass allergies and some more too.

Many thanks again.

Kim

Kk_213 profile image
Kk_213

I am 31 now, or soon. I was diagnosed with fnd early this year, and with EOE back when i was 15. Before it was fully understood. I suffered from severe or what felt like severe acid reflux. Up until 4 years ago i noticed food getting stuck, and would sip fluid, not carbonated drinks to wash it down. Finally it became so bad that the fluid would get stuck on top of the food. Before i knew it i was choking anf couldnt breathe. Ive leqrned to live with this as any one my docs will not widen my strictures. You leqrn to eat in smaller bites, especially anything with grain i.e breqd, rice, etc..u begin to tell when to take a sip ot when to wait anf massage it down by moving ur neck in different position. Wish you the best of luck. I.e steroids i dont use becuz of the prolonged need i would have in top of my list of other pills.

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