Role Call....How is Everyone Doing? March 2010

I know I am new here and just posted these, but I thought it would be good to add them in here too.

Here is a list of my current symptoms, and something of a timeline.


Last 13 years - heartburn, indigestion, constipation, over eating when full, urgent hunger pangs.
Last 3 years - hoarse, singing voice went slowly from very good to useless.
Septemder 2008 - felt like epiglottis was swollen lasting for 2 weeks.
April 2009 - itchy prickly skin
July 2009 - epiglottis feeling returned. no relief, voice hoarse, register dropped.
August 2009 - lump in throat well established, although not there in the mornings. Sleep apnea.

Sept 2009 - as above
Oct-Nov 2009 - as above, sleep apnea worse, snoring, itchy skin subsided. Lump now present mornings from 10am. Sore right ear. Locum prescribed rabeprazole, bloods done, normal results, albeit borderline anaemic.

Dec 2009- lump seems harder, right ear painful. Cant lie on front, feels like airway is blocked this way. Snoring and apnea when sleeping on back.
New Year Eve 2009 - ENT, bowed vocal chords detected, rabeprazole doubled, gaviscon added.
Feb 2010 - symptoms intensified, lump present from waking, throat feels like concrete, palpatations. Ears sore. Voice unreliable. All symptoms much worse in evenings. Discomfort has spread to upper chest, painful belching occurring with the rock in the throat feeling, and unable to yawn properly when throat is bad. I have also developed restless legs syndrome.
March 2010 – more bad days than good, throat symptoms worsening, feels like a rock in there all the time, tight, painful, and ears hurt. Restless legs every night, palpitations. ENT review, no real advice, throat examination cursory, no mirror, chords not examined. Meds not changed even though my symptoms are worsening. Sent for barium swallow.

Food/drink makes no difference to anything, with the exception of alcohol, which, immediately upon drinking causes throat to feel closed, and voice to disappear. Quit drinking alcohol in November. Quit tea/coffee/chocolate/sugary stuff/tomatoes/spices in Feb.

These symptoms are very alarming and the lump feeling hurts a great deal. "globus sensation." It is much more than a sensation, it is crippling. Once it kicks in I just shut down, I can’t read with the kids, cant stand up, feel exhausted from straining against the pain.

I have yet to receive a solid diagnosis. I have yet to receive any advice with regard to lifestyle/diet/strategies for sleep. I feel very strongly that my treatment is not effective and that my recent review was not adequate. Surely if my meds are not helping then they need to be changed. I feel that 8 weeks is too long to wait while symptoms are steadily worsening. Awaiting barium swallow results.

Alcie here -
I'm 4 1/2 months out from Toupet fundoplication (partial wrap like Nissen). I'm able to burp right after eating, no pain from op anymore. I still can't eat vegetables that produce gas, so make a big effort to eat salad to get adequate vitamin K.

I found out I am seriously low on vitamin D despite taking 3 supplements that contain it. I found an article that explained to raise vitamin D level 1 ng/mL in the blood you need an additional 100 units of supplement. My level was 18, should be 32 in old scale or 50 new. So I need 2000 units more to raise to 38 or 3000 units to raise to 48. Taking this just one day improved my pain level (mainly fibromyalgia and side effect of cancer meds) by about half. Yay!

I have no reflux. Also have no cardiac reflex tachycardia as long as I avoid my food allergens/sensitivities. I tolerate more foods now that I have had the wrap!

my7pinecones, no I am not seeing a GI doc, I only heard of them since joining this forum! My trouble with that is, I am not properly diagnosed with GERD, they are just giving me GERD type treatment, but no one has named my sickness. I am going to mention this at my review, but that is 8 weeks away and I am rapidly deteriorating.

Alcie,
Glad you are getting results from your Vitamin D supplements. I was dx deficient and now take 50,000 IU D3 once a week and 5,000 IU D3 daily.

Dear Friends,

It is so good to read your updates and some of you are up and some not feeling so up but it is good to hear from you.

Come on all, let us know how you are doing. Remember we are family and we need to keep in touch with each other.

Happy Monday !

Kitt

I had the Nissen Wrap Jan 18, 2010. Have recovered pretty well. Still not enjoying eating very bready things, although I can. I just feel an unusual feeling in my throat. Still have some gassy feeling with carbonation and usually limit myself to one per day. That is much healthier anyway. All in all recovery went pretty well.
Now I just have this very uneasy feeling in my stomach, particularly upon waking. I really don't know what is causing it and am fairly sure that it is unrelated. Maybe some anxiety. It has been a problem for several weeks so I may be back to see my GI doc for a new reason.

Best to all!

Stacey

Hi All,

Glad to hear all the updates.  Thanks Kitt.

I had my Nissen surgery in Oct 08.  It worked great.  No longer the coughing until I threw up or completly losing my breath.

My cough was still there, but different.  This fall it has been bad so I finally broke down and saw an allergist on Monday.  My lung function is fine, she tested it.  Found that I am allergic to dust mite, outside mold, cats (don't have one), weeds and ragweed.

She gave me load of samples and one of them was a new allergy tablet.  Took one Tuesday and could tell a world of difference.  When I cough it is just a natural cough, no mucus, no long hard coughing.

I will start allergy shots as soon as the serum comes in.  I choose that since insurance pays for it and they won't pay for the newer allergy tablets.  Or at least only for a few a month if at all.

I am so excited to feel normal again.  Hopefully with the shots and some otc allergy tablets I will be cough free.  The dr told me that Sam's has some allergy tablets, she said about 100+ and that they cost $20.00.  She said I could take one of them in the morning and one at night.  The tablet she gave me is a 24 hour one.

Hope everyone improves soon.      Jayne

Hi all-
Things are really well since the redo and holes in the stomach have completely healed. Sure is nice to be able to eat steak again! Just wish they would have found out what was wrong about 2 1/2 years sooner.

Take care,
Bill

Jayne-
sorry guess I should have put the date. LOL! I had the redo back on May 18th.

Take care,
Bill

My symptoms are slightly better :D

Going for Endoscopy on mar 30th

Happy to be finally getting more tests done after waiting 4 months.

Regards all,

Martin

MinnesotaMark here...

After 15 yrs of GERD- on and off, finally went in for a Endo after a bad episode in Nov 09. That's when i joined HW. Was diagnosed with Barretts (non-DP) and a medium Hiatal Hernia. I had Barrx Halo 360 back at the end of Jan '10. Went very well- in a couple months I go back to see if the BE has all been successfully ablated. I take 40mg Prilosec a day staggered and have good days and bad days-but mostly good. On bad days, mostly a little pressure, and burping---no real painful burn. I have made drastic changes to my diet and have been exercising like a fiend since Nov and lost 30lbs (about another 15 to go). This seems to have helped quite a bit. However, I can't imagine taking these pills for the rest of my life (only 40) and also never being able to eat certain foods again...so I am researching surgeons for a Nissen (or whatever is recommended) for some time this summer. yea. I am very greatful for all the support and information that people share here. It is refreshing to see all the positives stories (and attitudes). Most of all, it is comforting to have peers who understand what you are going through!!!

Post Edited (MinnesotaMark) : 3/19/2010 7:22:36 PM (GMT-6)

Good Morning All,


Reading your updates is truly wonderful to see how each of you are doing.



I am glad to read some of you are doing very well and yet it saddens me to hear of others who are still battling. You know each of you are in my prayers daily and if your facing surgery or procedures know the members are all here to send you good vibes and hope that your issues will be resolved or identified by all the tests and procedures.



If you feeling really good, do enjoy every moment as you deserve it. You have come a long way.



Now let us hear from more members with updates..........once a member of this family, always a member. We care !



Gentle Hugs,



Kitt