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! 😋📖
My Neuro Appt. Update
Dr update.
Ms symptoms but mri clear
Update on Dermatology appt :)
