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More tests, feeling more like a guinea pig every day

Cape_Cod_Sharon profile image
12 Replies

Yesterday I had to go to the hospital to have a upper endoscopy imaging test.

Let's begin with no one told me I would need a ride home...drove myself to the hospital, had to leave my car on the lot for several hours.

No one told me I would be sedated. That heavy sleep for an hour was actually somewhat refreshing.

The purpose of this test is to determine the health of my esophagus and stomach, been having issues and looking for the reason behind the ascites [excess fluid in the abdominal cavity]

I did ask the Dr. directly what my diagnosis is...he said "some form of cirrhosis of the liver" Let me just state for the record I am not a drinker [of alcohol] never have been. He reminded me that non-smokers can get lung cancer....

The nurses were lovely, they always are. Very caring and professional.

If I tried to sit down and make a list of all the health issues I have had to deal with over the past 20-25 years...I don't know if I could do it. It would be quite long and quite extensive. That is why I am feeling more like a guinea pig every day.

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Cape_Cod_Sharon
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12 Replies
fenbadger profile image
fenbadger

That GP looks like one my grandsqueak has just acquired.

It's appalling you didn't get that rather vital info beforehand. Was there nothing on the letter? You may have grounds for complaint. Were you offered the throat spray as an alternative? It seems pretty basic advice. We certainly get that advice here (Hampshire, UK) I see you're in the U.S. so I don't know the procedures over there.

Cirrhosis is not entirely down to alcohol, so don't worry what people say about that. I cant see the connection between endoscopy and liver function. I thought there were separate tests.

Cape_Cod_Sharon profile image
Cape_Cod_Sharon in reply tofenbadger

Hi,

The stomach and duodenum are causing me pain and the esophagus is an ongoing issue. And you are correct, neither would be the cause of the fluid build up but like I said...it's 4 AM LOL

Also I never received any pre-op paperwork. I'm not sure why I didn't, they are usually very thorough. But there was a recent shift in hospital management [??]

Cape_Cod_Sharon profile image
Cape_Cod_Sharon

And it is almost 4:30 AM, been awake since 3:00. Forgot to mention one biopsy from the esophagus, 3 from the stomach/duodenum. Results expected in about a week

spider555 profile image
spider555

Yup me too. Nearly two years of tests.

Hi did you get the bowel prep, the information should have been with that. So sorry, if it wasn't. That is not good. Take care. X

Cape_Cod_Sharon profile image
Cape_Cod_Sharon in reply to

Blue52,

No bowel prep. This was in through the mouth cable with camera and tiny little tools for taking samples for biopsy.

Shazzzy profile image
Shazzzy

Hi C C Sharon, hope you get a good sleep and recover today. Take care,

Glasgow Sharon !

rosewine profile image
rosewine

It's a bit if a shock when you don't get the right paperwork. It happened to me once drove myself to a procedure and when it was over I am sitting there only in underpants when they said we will ask your husband to come in and sit with you as you will have to stay here for a few hours as you have bled quite profusely so we will get you up to the day ward for a rest and a cup of tea and a sandwich. I managed to stop them just in time as they were going to bring a complete stranger in, lol.

Like you I had not received the right paperwork had driven myself there and my husband was away on business until late. Had to drive myself home and half way back the local anesthetic wore off and boy did I have some pain. Having an anesthetic is the only time I have ever had a good sleep in my life, last time I had to have one I asked whether I could have one on daily prescription.

It is strange as we always think of cirrhosis as being alcohol related but some years back I was diagnosed with a fatty liver the precursor to cirrhosis when I was neither fat, diabetic and only had a few drinks in a week, eat sensibly and has plenty of exercise. Sometimes these things just​ happen.

Sincerely hope they get some answers for you all these tests can feel endless can't they and it sounds as though you have had a great deal to contend with over the years. Please let us know how you get on.x

Cape_Cod_Sharon profile image
Cape_Cod_Sharon in reply torosewine

rosewine

Aren't you sweet. Thank you for your kindness and understanding. We all have to wonder from time to time "what the heck did I ever do to deserve THIS?" The answer is in your words..."Sometimes these things just happen."

That being said, with every year that passes I find myself realizing that more and more people [mostly ladies] are being diagnosed with fibromyalgia.[the beauty of the internet]

And it's everywhere, USA, UK, Europe, Asia, Central and South America, Australia. So my big question is "Why is this happening?"

Also I would like to know how much actual research is happening around the world. Are there lab technicians somewhere [ANYWHERE??] testing, researching, working on [1] medication to treat neuropathy [nerve pain], muscle pain, bone pain etc. and [2] a vaccine to prevent the onset of fibromyalgia or [3] a CURE!!

The ONLY medication they've managed to toss our way in recent years is Lyrica. The side effects are so bad my Doctor wouldn't prescribe it to me even if I wanted him to [which I don't]

I take the highest dose of gabapentin [Neurontin] allowed. [3200 mgs. per day and I still suffer greatly from neuropathy in my lower legs/feet. I take 40-60 mgs. of hydrocodone/acetaminophen every day [this doesn't work to fight nerve pain but does help with other types of pain] and I take 15 mg of cyclobenzaprine [Flexeril] for muscle spasms [you call them twitches]

Gabapentin is actually an anti-seizure medication primarily prescribed to people with epilepsy. Interestingly enough, one of the side effects of Neurontin [gabapentin] is twitching.

I am falling asleep at the keyboard, so I will step down from my soap box [for now] I will let you all know when we get the pathology report. [I'm sure it's all benign]

Hugs and sweet dreams

~Sharon

rosewine profile image
rosewine in reply toCape_Cod_Sharon

I am actually on Lyrica but on a low dose as anything higher and I am in Zombie land and wouldn't be able to drive. It has helped the shooting, burning pains but I still get the pins and needles and strange sensations in my legs but not quite so bad.

I have a theory about fibro, well several. Strange more women than men get it so I wonder whether there is a hormonal factor. Also so many on the forum have had big stresses in their lives often in childhood before developing it either one big stressful event or juggling alot over a long period of time (that was me). I wonder if in the end our body just says ,,"no," and starts to react to all the tension.

There are people out there working I different countries but I think they need to pool their resources more. The problem with having an illness that doesn't kill you and you can't clearly see or identify with blood tests is that it is just seen as a priority. Until this mindset changes I don't think we will get far.xxx

TheAuthor profile image
TheAuthor

Hi Cape_Cod_Sharon

I really am so truly sorry to read this my friend and I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

Al10 profile image
Al10

And what a nicely dressed and cosy looking Guinea Pig!

Hope the endo went OK and it gets you some answers.

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