Newly diagnosed emphazyma 46

Posted by thinkpossitive @thinkpossitive, Mar 1, 2019

Hi I was diagnosed 8 days ago. I was a long time smoker since teens. I stopped 8 days ago when I was told. I had chest X-ray and ct scan. Showed moderate/severe. It’s only in middle of my chest. I only have issue when go up my stairs 20x a day. I tend to jog them cause I am always rushing. Had cough from smoking or so I thought. I was given a inhailer. Now I am super special because I also have MS. Talk about double no cure diseases. Trying to still smile. So my concern is that possibly I am just that lucky or my ms iv I get once a month or just the ms it self could possibly have made this progress faster than normal. I have been on meds for at least 4-5 years. I can’t get a flu shot due to my meds. Ugh I am seeing pulmonary dr end of March again and have one more breathing test scheduled. I also have appointment with neurologist to see what he thinks. I am also seeing a naturalist my daughter works for to help me make my body strong and healthy. I just feel like my head is spinning. I have to be my own advocate and I am so tired already. Staying positive but this is dx is much more upsetting than ms. Sorry so long. I don’t know if I should travel to see a emphazyma specialist. Suggestions.

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Merry, Alumni Mentor | @merpreb | Mar 2, 2019

@thinkpossitive- Good morning and welcome to Mayo Connect. I love the name you chose! Attitude, although intrinsic is very important! I'm very sorry that you now have emphysema on top of MS. I also smoked for a long time and wound up with COPD, Emphysema and Lung Cancer! I have mild emphysema. Please don't panic before all of your tests are finished and you have spoken to your doctors, as hard as that may seem. Make sure that you use your inhaler properly to get all of it's benefits. If you don't have a spacer, please see if you can get one. Spacers are a pain but they help get the most out of your inhaler. I have 3 inhalers and I can use the spacer with 2 of them. Here is a video that explains how to use a spacer. Also you can google how to use your inhaler without one, if you choose not to use a spacer. https://www.youtube.com/watch?v=hCAsW7OM9Ns
I caution you about seeing a naturalist because their medicines aren't regulated. Before you buy anything or take anything please check with your doctor so that there is not any possible complications with any meds that you are taking.
There have been some great new techniques now to treat emphysema. I encourage you to read the posts in this group. And please don't hesitate to ask questions! Everyone here has probably experienced the fears that you are having and the symptoms. You bring an entirely new dimension to the table any input and symptoms and helpful tips will benefit this community! We are all about helping each other anyway we can.
May I ask how your MS shows itself in you? You may have to slow your stair marathon down. Getting as much O2 is very important. I hear you about always rushing! But with Emphysema you do need to pay attention to your body. If it says to you to slow down, listen to it! 🙂
How are you dealing with not smoking? I had a very rough time as I was also recuperating from lung surgery. You may want to take a look at this group too, https://connect.mayoclinic.org/group/smoking-quitting/
And we also have an MS group if you'd like to see what other people are saying, feeling, etc. https://connect.mayoclinic.org/group/parkinsons-disease/#/!tab= ...
https://www.mayoclinic.org/diseases-conditions/emphysema/symptoms-causes/syc-20355555
https://www.mayoclinic.org/diseases-conditions/emphysema/diagnosis-treatment/drc-20355561

clipper | @clipper | Mar 2, 2019

Hi
Just a couple of thoughts. I do think it is important that you see a good pulmonologist especially since your situation is more complicated. I would ask your neurologist if they know a good pulmo, someone they have worked with in the past. For you, good coordinated care might be important. Once things settle down a bit and you have a treatment plan for your emphysema, you might think about traveling to get a consultation, just to confirm that your treatment plan makes sense. Usually a good teaching hospital will have good pulmonologist.

In addition to the breathing test, the pulmo should also order a blood test to check for Alpha-1 which is a genetic form of emphysema. There is an additional treatment for alpha 1 antitrypsin so it is important to know.

I am 65, I am early stage 4 emphysema and in a little bit I am going to the fitness center to workout. I live alone, I am still independent, I manage. It changes things but life keeps going. Exercise, healthy diet, and then more exercise is the key. Talk to your pulmonologist about an appropriate exercise routine, possibly pulmonary rehab or physical therapy.

fracturedd | @fracturedd | Mar 2, 2019

It sounds like you are on the right path. Definitely listen to your body and don't push yourself. However keep moving! I don't know enough about ms, but knowledge is power, so seeking out a holistic approach as a secondary opinion is a good thing. Try not to stress.