Saw my pulmonologist on Tues. “Why haven’t you been using your Cpap?” Me: “Sometimes I feel claustrophobic and it’s hard to breathe. I also have had shortness of breath since I had Covid last June after coming home from our trip.” This led her to have me do a 6 minute walking test - my oxygen didn’t drop below 93%, they get worried when it drops to 88% so good there but winded. Oh, and I have a walking boot on since I fell off the toilet (story for another day. Remind me if you want a laugh!) and severely sprained my ankle. One muse said I should get double credit and I replied, “I think I should only have to walk 3 minutes.” Made them laugh but still had to walk for the whole time. Then a chest X-ray which showed something in the bases of my lungs. So now I have/get to have a chest CT with contrast. She thinks maybe blood clots since I had a long flight and then immediately had Covid. I’m concerned about having the clots move! She looks at me kindly, and smiles then tells me, “They’re already in your lungs…there’s no where else they can go.” Fortunately she didn’t remind me I’m a nurse and should have known that - which I did, but hearing that info about clots in MY lungs made me panic initially. So if CT shows clots I’ll be on anticoagulant therapy for 6 months, if something else then a steroid inhaler for 3 months. Also have to have pulmonary function (breathing) tests done to help diagnose the problem.
The next day we meet our/my new neurologist who we spend 2 hrs with! I really like her, patient and listened well. She says I have only had one incident which was optic neuritis in my L eye so it’s only CIS (Clinically Isolated Syndrome. ) In 2014 I went from blurry one Friday to totally blind in that eye the next Friday. I end up having a lumbar puncture and more lab work. The LP showed 15 oligoclonal bands and 3 high dose IV steroids in 24 hrs. I did regain almost all vision back but don’t watch me pulling into the garage…whoever thought it was a good idea to put 2 doors on a garage door! 🤣 She’s thinking it may be MOG, which I hadn’t heard of until I read a post here 2 days prior to the appointment, but can’t find it now. It’s another autoimmune demylinating disease.affecting the IgG antibody. So lab work done, still waiting for the MOG results; scheduled for brain, cervical and thoracic spine MRIs wo/with contrast which need to be done 3 days in a row because I have an implanted neurostimulator. They limit the time to 30 minutes because they don’t want to risk the lead wires moving from the magnets or it getting too hot and burning me! Seems like a lot of contrast over 3 days but what do I know…the pulmonologist proved not much! Lol. Those are scheduled end of May and June 1st. Then in July I have an ARS (autonomic reflex screen) done which can take over an hour or 2 depending on what they all do and immediately afterwards I have a f/u appt with the neuro doc. She said if she came across anything else as she goes through my old records she would call.
All in all had 2 long days and didn’t learn much but did learn a lot. Now we sit and wait for tests to be done and get results. Oh yeah, my Cpap got turned down 3 notches that stays the same all night long!
Hope everyone has a great day or evening since I don’t know where everybody lives. Thanks for listening, my dear friends.
Pam
Maybe I should become a writer since my posts recently have been very long! 😋📖
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Hi Pam, I found your post very interesting and I too learnt a lot. Thank you for posting as it may help some other reader if they are having similar issues. Let us know how you get on with all your tests, take care, blessings Jimeka 🤗
I am exhausted just hearing about all of these tests! I’m sure you are glad to be getting them done. Please keep us updated on your future results as well. Will keep you in my thoughts. Kelly
Thanks, Kelly. It was an exhausting week with 3 appointments the day after we got home and 1 more today. Sometimes I look at my calendar and only see red! (That’s the color I use to designate medical appointments.) 😆
Hi, I too had been sent to a Pulmonologist before I was diagnosed with MS, they saw something at the bottom of my lungs. Turns out what he said was I don't use the very bottom of my lungs and it shows on scans like there's something there, but nothing to worry about. Fast forward to after being diagnosed with MS and having spasticity and tremors in my diaphragm and respiratory muscles. Sometimes I feel like I have shortness of breath, but I can breathe fine, I just have to take deep breaths and do diaphragm exercises. I hope this helps and that you do not have blood clots.
My wife got me to take the sleep study test. they said severe chronic obstructive sleep apnea and ordered me the machine. after the 3rd different mask I gave up, in VN had an underwater experience chasing an armed VC in a water-filled tunnel and ran out of air---almost drowned. since then anything around my face has brought back that awful feeling of not being able to breathe. Since 1968 found myself holding my breath whenever I showered. Wife or I have to sleep in the guest bedroom often as the noises I make are disturbing her so much. Guess we are stluck with my sleep apnea.
First, thank you for your service!! Freedom isn't free.
Second, my husband's family is full of CPAP users. When he got his, he couldn't stand the mask either, so he gave up. Then he got the nasal pillows. It's like a nasal canula for oxygen but it's larger. It fits just on the nostrils and has a strap around his head. He does great with those. There is also a full face mask now. It looks sort of like a face shield, but it would probably make you feel too constricted. Just check to see what's out there and you may find something that will work for you. Good sleep is so important. Best of luck to you!
Dear Shadowperson, Thank you for serving this country. I’m sorry you had that awful experience. mueller531 is correct, I do use the nasal pillows and they are better than anything else. I also discovered last night that having the pressure adjusted made a big difference. I think I can do this now.
You probably already know all the health problems sleep apnea causes. Would you be willing to try something other than a mask? I don’t think I could sleep in a different bedroom than my husband every night and sounds like you’d like to be in the same room as your wife. I’m currently working with a trauma counselor and she has been wonderful, working through things together, not easy but I’m making progress in the right direction! This disease is difficult enough on it’s own without having additional chronic problems.
I’ll be watching and hoping you can share updates on how you are doing. I know you are new to the group and I’m glad you found us! You just became the newest person I follow! There are lots of us here to support you!
the blood clots are terrifying. i think you can forgive yourself for panicking.🤗 i'm glad you already know the plan of attack.
2 hours with a neuro! she sounds informed and thorough. i'm with you on the ms adjacent diagnoses. i was diagnosed with transverse myelitis. sometimes it feels like i'm just waiting around to see if it'll happen again, though spinal mri's aren't the most reliable. i had a neuro who thought i had lesions that weren't showing up on the scans. w/o them he wouldn't diagnose me, even though he could point to where on my spine the lesions would be that caused my new symptoms.
it's frustrating, but again it's great to have a plan of attack!🤗
Thanks, BlanketTime1. It is always good to have a plan of attack although sometimes I just want to attack!! 😁 It’s hard after going 9 yrs being told I have MS and then told maybe not. I told my husband it’s weird to change from not wanting MS to kinda hoping it still is since I’m familiar with MS.
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