OK, got answers but now more questions

I went to the Clinical Social Workers office today and she helped me push to get some answers. My MRI’s of head and neck came out good. WooHoo! No blockages or aneurysms found. High Resolution CT Chest Scan found the Interstitial Lung Disease but they still don’t think it’s bad enough to be causing the problems I’m having breathing. Two more tests being ordered. For one I’ll have to go to USC or someplace out East. Can’t remember where he said. So, once again, I know what it’s not, and some of what it is, but not all of what it is. Geesh! Well, the good news is, it’s progress. Wait, wait, I think he said Harvard. Oh well, guess I’ll fine out when it’s scheduled. C’mon mind, start working. :wink:


Agree with Judith. Good Luck!

Happy for your good news, but frustrating not to have more answers. Send me the social worker’s number I want her help:)

That is good news.

I’m thankful for the good news but I’m sooooo frustrated about not knowing the answers yet. It’s the not knowing that is killing me. I can’t do anything without loosing my breath and breathing is really hard sometimes. I’m classified as disabled it’s so bad but nobody can figure out why. I just want answers you know. Thanks for all your great comments everyone. I’ll keep you posted.

Well, that’s Terrific that the MRI results came back Good and that the ILD isn’t too Bad. Good Good!! I wish that I knew more about breathing problems. I have Asthma and I know that the humidity can make it tough to breathe not to mention the pollution.

You said that you gained weight from the Prednisone. That can cause problems with breathing just by carrying the extra weight around and doing simple things like bending over and tieing shoe laces. Do you have Sleep Apnea? Sounds like some oxygen may be in order, if you are Really concerned about it. How is your blood pressure?

Soon, soon, I hope that you’ll know all answers. Perhaps you could act more urgent, so that they’ll get your new tests back much sooner also. Thanks for posting back and much Good Wishes to you Clayton.

Some Beautiful photos that you have there btw. I especially like the Ominous Sky and the Black Light photo and the Feathery Lady?.

My wife is a Bruin, so I suggest Harvard over USC :wink: Joking aside, I know its not the answer your looking for, but it does sounds like some good news and like you said, its progress albeit slow progress. Just keep pushing!

Well, I have a lot of black outs and that’s why the doctor thinks I also have Cataplexy. As far as my breathing, I think I may be low on oxygen when home just sitting because I yawn a lot. However, as soon as I start talking, moving, exerting or stressing my breathing gets very labored. Every where I go I am constantly asked, “Are You OK?”. I’m thinking of getting a shirt that says “Hell No I’m Not OK!” :wink: Every time they test my blood gasses and pulse ox my oxygen is fine my my carbon dioxide is high. They have never been able to test me eat total rest since those times are few and far between.

Yes, I do have sleep apnea. The way my doctor put it, I have Very Severe Sleep Apnea. I sleep using a CPAP machine and have a nebulizer to use during the day.

It’s over 100 here again today so I don’t dare go outside. I think it’s time for a nap. :wink: