Maybe I Have Something Else Whipping Me Other Then My Pots

[Maxine]

Hi----

On May 4th I got an x-ray of my lungs and soft tissue in my neck.

I went to my PCP with an upper respiratory infection, but that is not what I was actually seeing him for.

I went there because I have swelling between my clavical and neck on the right side. It looks like that x-ray was normal, but I still have some pretty noticable swelling. It's almost like a fluid build up. Anyway, it's very difficult to put my purse on that shoulder. It's difficult to hold anything in that arm, as I have subluxation of rotator cuff, shoulder blade, and wrist. One or the other will act up, if not all three at once.

I'm also still struggling with respiratory issues. I can't seem to stop the mucus overload in my lungs. I keep coughing up gunk all the time. That's why my PCP thought I should have the chest x-ray. It also feel like I can't take in enough air on the right lung. I thought it might be cause dby the desiccated disk on t-8 affecting my respiratory system. The disc is gone, and it's bone on bone. I also have intermittent compression on my brain stem from the cervical/cranial instability-----------AND, I know this affects the respiratory system secondarily. I also have sleep apnea, and have respiratory events at night. I was not able to complete the sleep study for testing the c-pap adjustments. Then one thing after the other was going on ------either with my health, or my family. I just lost my brother to colan cancer in Feb. Anyway, I got overwhelmed with idfferent doctor's appts from my various health issues, so I never finished the test and got my c-pap machine.

Anyway, I'm wiped out------------and it seems a little more then my usual. It feels different then my usual POTSY issues. I seem to have added fatigue on top of that.

Has anyone ever hear of mild reticular nodularity and interstitial pattern?

Thanks,

Maxine :0)

[Maxine]

Bumping this----trying to see if any of you know what this means?

Sorry, but this makes me nervous. This is my lungs, and I can't believe the Doc didn't call me about it. The hospital I had this x-ray taken at DOES have a previous x-ray to compare it to, so I don't understand why they said they needed one, as they have one right there if they would just look.

I don't understand how some of the minds of these docs work.

Maxine :0)

[dawson20]

http://www.netwellness.org/question.cfm/58443.htm

Definately worth followup - sounds like if it was there in the past xrays and hasnt changed over time it could just be scarring form old infections or some such, but if its new it could be pretty serious...

Squeaky wheel - hound them till the tell you whats up!

[cordellia]

hello maxine,

please accept my condolences-- i am so sorry for your loss.

please revisit the apnea issue... CPAP has made a an appreciable difference for me...

my lung/breathing issues have lessened. i also stopped eating both wheat and dairy

products and noticed an immediate improvement after a few weeks. the difference was

marked. clearly every individual's body is unique---i simply know that CPAP and

diet combined have helped...

where was you sleep study performed? we have had better luck at some labs-- and rather dismal experiences

at others... (both my husband and i have sleep apnea)

with my best,

cordelia

[mkoven]

I"m sorry I don't know what those terms mean.

Let me second the idea that you get fitted/titrated for cpap. I"ve been on it since 4/08 and it really helps so many things--most obviously fatigue, pain, and mood. And untreated apnea will slowly wreck anyone's cardiovascular system and brain tissue--without pots or eds. Every episode of apnea is like a suffocation, sending your ans into a tailspin, even if you don't remember those events when you wake up. I know you know this, so I'll get off my soapbox. It took a couple tries to get the right mask, and to get used to it, but now I wouldn't dream of going to bed without it. When I unintentionally fall asleep in front of the tv or in the car, I can really tell the difference. Your body needs good-quality sleep to heal the best it can, and apnea can impede that. I believe a number of hormonal processes involved int issue repair occur most in the deeper stages of sleep --the stages that tend to get disrupted and shortened if you have apnea. I've found that www.apneasupport.org is a very helpful forum for info, support, etc.

Cpap didn't cure my ans or eds issues, but as the doc who got me on cpap said, sleep apnea will make every health problem worse and harder to deal with.

[Maxine]

Thanks for the information and support----

I know I need to get that c-pap machine going. I'm so overwhelmed with Toledo docs not getting it, so I have no help or support locally. Dr. Grubb is here, but I wouldn't dream of bothering him with all of this--------------I just let him deal with my POTS. He has enough on his plate now as it is. I have discussed some of these issues with him in the past appointments just to see if he may know of someone who can help. But other then that, I don't expect anything else other then treatment for my ANS issues.

I think my diverticulum in my duodeum/small intestine is acting up. I have had thw worst gas-----------(so sorry--- ). It now has the most distinct odor and it's so embarssing. I hide when i'm at my worst with this. The problem is that I love anything with wheat-------so avoiding gluten would be really difficult. If they get a biopsy saying I have celiac, then of course I'll do what I need to do.

I need a full workup at cleveland clinic or somewhere. I'm not taken seriously. Ym PCP is fine, but he seems very overwhelmed with me. His secretary is the worst person he could ever have answering the phone. he doesn't have a nurse, as he handle taking BP, weight, ect. on his own. He's very old fashioned in some senses, but definately up on the latest medicine. Even though he keeps up, he still has trouble finding help for me. We thought Johns Hopkins would be helpful, but they only want to see me for EDS and said there's "no specific treatment" they can recommend for the CCI, or aother problems I have. AMAZING! JOHN'S HOPKINS---------------AMAZING! Docs just don't want to deal with the liability issues that can arise with CCI-(cervical/cranial instability). I'm sure that's what Johns Hopkins is trying to avoid seeing me for.

I'm a mess, and I want the help I deserve.

Maxine :0)

[Maxine]

From what I'm reading------------mild reticular nodularity and interstitial pattern mean NEOPLASIA!

NOT GOOD

NOT happy about not geeting a phone call on this. I CALLED THEM! What if I didn't call them!

This x-ray was taken a month ago.

Maxine :0)