Got And Addendum Of Chest X-ray

[Maxine]

When I called the radiology department last week, I told them they had an x-ray there to compare it with. They said they needed an order form my doctor to do it. He must have sent it as, yesterday I got an addendum to the x-ray and they said no changes from the 2006 x-ray saying still a mild interstitial promanance in both chest x-rays that has not progressed in the three years.

My PCP ordered a CT scan that I'll have done next Tuesday the 23rd. What's confusing is that on the CT order my PCP has nodule and neck pain----weird.

But on the CT report they have reason; "calcification? see order". CT report said mild interstitial prominance. I don't want to call my doc's secretary, as she has the most dull personality I have ever seen. She doesn't speak, you have to drag the words out of her. She sounds annoyed every time. Everyone complains about her phone personality--- .

Anyway, can you say a little prayer for a good outcome? I just want to get this testing out of the way, and rule out any other health issues so I can work on getting myself to a more functional state. I still have the nagging congestion, and a feeling like I'm having slight bronco spasms----kind of like forced air, or air being pulled out.

I read somewhere that respiratory problems can be related----ciliac disease. I WOULD like to know how I ended up with 3/4 of my large intestine ended up covered with diverticuli, and my small intestine got such a big diverticulum of 5cm. I wonder if it's related. I don't want anything to be wrong------especially the BIG C. I need drugs-----drugs for bad nerves. Don't worry, still toughing it out on my usual dose of klonopin, well actually only half the dose. However, I DO have the option of full dose on bad days, or even more on a especially rought spot. I have the reserve, due to only taking half the dose.

I'm telling you, why put myself through that if I can take the edge off, and give my ANS a rest.

Still praying for the results to be harmless.

Maxine :0)

[janiedelite]

Hi Maxine, I'm glad you've got something you can take to help your nerves. I really hope you can get some answers from your upcoming CT scan! Janie

[all4family]

Hi Maxine,

Sounds like some reassuring news anyways. I am saying a prayer already!!! Take care, and do something nice for yourself. I think we get so busy with taking care of being sick, that we forget to do nice things for ourselves. It sounds corney, but I treated myself to a smoothie, and sat under a shade tree in a park for about an hour the other day, and it was sure nice. Simple, but relaxing.

Hugs, and lots of prayers coming your way!

Suzy

[summer]

I'll be praying everything comes out ok. By all means, give yourself a break from the stress if you can!

Summer

[flop]

Hi Maxine,

it is really good news that the lung problem hasn't got worse over all those years - it suggests that it is something that isn't developing or getting worse (which doesn't sound like cancer, yay!).

I guess your doc put about the neck pain and swelling above your clavicle to make sure that they look at those bits on the CT scan too, if you are having a CT you might as well get as much info as possible from the report!

I think that with the lung - bowel connection you might have got a bit mixed up (easy to do with brain fog plus klonopin!).

One type of GI problem is coeliac disease (also spelt celiac) due to gluten sensitivity. In coeliac disease the duodenum (first part of the small intestine, just after the stomach) is damaged by gluten in the diet. Normal duodenum has lots and lots of villi (tiny finger like projections) that give a big surface area for absorption of nutrients. In coeliac disease the villi get destroyed by gluten so the person can't absorb their food properly.

A similar word is "cillia" which are small hair-like projections on cells. Cillia work by wafting things along. In the lungs they waft mucous out of the lungs (smoking destroys lung cillia which is why smokers cough). Other parts of the body have cillia too and there are some rare diseases that are due to problems with cillia throughout the body. Things like Kartagener's syndrome where the internal organs are back-to-front and the lungs are damaged by buildup of mucous and chest infections, but things like that are very very rare and are usually picked up by doctors during childhood (heartbeat is on the wrong side of the chest, liver is on the wrong side etc).

With all the Latin words that are used in medical stuff, I'm glad that I learnt some basic Latin vocabulary!

Flop

[flop]

Ok - really got the google bug today!

Maxine, I looked up about large diverticuli in the small intestine and found Meckel's diverticulum which seems to fit! It would suggest that the big diverticulum in your small intestine has been there since you were born and is not related to the ones in your colon (which appear later in life in lots of people).

Flop

[Maxine]

Thanks for reading, and offering your support. It means a lot, and I wish I could offer more support to you these days, but things have been crazy. You wouldn't believe how long it takes me to post----but I do read a lot. During all this our kitchen is being remodeled, and we had no sink for 5 weeks. Then we finally got the sink, and had to wait another week for the dish washer. We had a few issues with to store working with us, but they are standing behind everything, but still a big stress. I can only do what I can, but there are days I over do it because my husband works sixty hours a week..

Needless to say, most of the time I spend recovering from anything physical I do-----even from taking a trip to lowes. It's overwhelming going there, and it's very difficult to navigate that store when you feel like a worn out old wash rag. Walking across the store to the bathroom it like climbing a mountain. When I sit down I can feel my body collapse, and it's very difficult to get back up.

Flop, celiac can be linked with repiratory problems;

http://www.articlesbase.com/wellness-artic...ems-854180.html

I also found this when reading about interstitial lung disorders;

http://www.nutramed.com/celiac/

http://medical-dictionary.thefreedictionar...itial+pneumonia

http://www.celiac.com/articles/82/1/A-List...ease/Page1.html

Also, the large 5 cm diverticulum is in my duodeum------the 3rd and 4th section. they don't know why it's there but there is some fat stranding--(inflammation) cause some wall thickening. I do remember two bad flares with this diverticulum, one causing such pain that it felt worse then labor pains.

Both times I ate corn, and I was very very sick. The first time I was only 28, and I remember a fever that made me see double. It passed, and I never saw a doctor. The second time I don't recall a fever, but had the same pain---------this was in my late 40s. I talked with Bev. , Dr. Grubb's NP when I went for a check up two days after this spell. I still had mild abdominal pain, but asked her if she would mind order a WBC just to see if it was elevated. It was at 16,000. She told me to go to ER or see my Doc on same day. I went to ER, and my WBC returned back to normal.

I do have a lot of gut problems. My bloating is so severe I can never wear fitted jeans. When I eat certain foods I do feel like breathing is restricted sometimes, but it's always been mild for the most part. I remember one time we went to a cheap chinese restaurant for lunch when I was still working, and I thought I was going to have to go to ER because I thought I was going to stop breathing. After that I had a lot of mucus. Right now I'm struggling with a lot of mucus throughout the day.

Well, I should go because my legs are crossed, and I feel like if I don't change my position I may be stuck like this----

I really appreciate your kindness-----------------------all of you---

Maxine :0)

[goldicedance]

Good luck, Maxine, on your CT scan. I think sometimes docs write the orders to include things so that the insurance pays. BTW, can you get an MRI of your lung? A number of years ago when my problem developed my doc thought there was something in my lung that could be causing the tachycardia. That was back in 1993. At that time, CT scans were used to diagnose lung problems. The radiologist and my pulmonologist thought there was something in my lung that needed to come out. She referred me out of area to Hopkins. There the radiologist who introduced himself with some bravado as the world's expert CT scan reader told me it was not in my lung but was a hernia that I probably had all my life.

My pulmonologist was puzzled by that and she felt strongly it was in my lung. She spoke to the head of radiology at her hospital who recommended an MRI. Guess who was right? My doctor...I did have lung surgery.

Don't jump to any conclusions. Do something nice for yourself to get your mind off things.

I'll be thinking of you.

Lois

[Maxine]

Thank you Lois----

I'm still struggling with a lot of pain in my upper back, and wonder if the two things are related. I still need to get a colonoscopy, but my PCP said I wasn't stable, and this was before my last x-ray was done. My breathing still feels somewhat restricted, and it feels tight on the right side of my rib cage. However the tightness seems to be coming from the thoracic spine problems I'm having. My EDS geneticist and orthopedic surgeon said my breathing can be affected from the intermittent brain stem compression from the cervical/cranial instability (CCI). They said the apnea is connected to that also.

I have so many diverticuli in large bowel, the GI doc was stunned. He wouldn't do a colonoscopy either and said he was concerned about sedation with my POTS. My pcp said he was concerned about the same thing, but more related to the CCI. He said if something happened from the sedatation and I needed to be intubated they could cause serious damage to upper spinal cord, and possibly brain stem. Now with respiratory issues, it further complicates things with that, and I need to get it done. The GI did offer to do another barium enema with double contrast, but I had that donw a year ago. The Doc from the NIH study said I should have a biopsy of the large intestine because the divertiucli seemed excessive. She said my finger nails were clubbed also, and she felt I may have some kind of inflammatory bowel disease. Interstitial lung disease can come with inflammatory bowel disease, but there hasn't been much research on this.

I hope that I don't seem annoying with this subject -----------------it's just scares the you know what out of me---plus I'm tired of feeling so bad all the time.

Maxine :0)

[goldicedance]

Maxine, I just thought of something...Can you have the virtual colonoscopy where you swallow something that takes pictures as it moves through your tract? Might at least provide some information without going through sedation etc.

Lois

[Maxine]

Thanks--

I thought about that, and maybe the Cleveland Clinic would do it. That's the closest major research hospital to me. The hopitals we have here locally are pretty good with heart and some children's diseases, but I doubt they have this pill. We have Dr. Grubb, so that's a big plus at that hospital. I think they have done quite a few heart transplants there also.

I've heard a lot about that pill. I wonder how much trouble I would have swallowing it, and I wonder if it would get stuck in any of the many pockets I have along my intestines.

I would love to avoid sedation any way I can. If I can't avoid it, the surgeon who ordered the colonoscopy previously had set it up with an anesthesiologist, and a trauma hospital, She is very good about this, and as an added bonus, she has the best bed side manner I have ever seen other then Dr. Grubb.

The colonoscopy had to be cancelled due to a virus, and we were afriad my strep throat was back. It was a short virus this time, and it made me so mad that I had to cancel-------------then my brother was in and out of the hospital for two months, then passed away from his colon cancer. I've been wiped out from the stress of it all. Now my PCP said I'm not stable, and has delayed it.

Anyway, hopefully I can get any major health issues ruled out-------outside of my pots, eds, hashemotos, and spine instability. Once I can clear my mind of those worries, then I can focus on trying ro build some strength.

Take Care,

Maxine :0)