torontoCPAPguy wrote:Madalot:
I have not read all of the posts but highly recommend that if your primary care physician is an SOB you need to dump him and find someone that you are happy with.
When I lived in the Washington, D.C. suburbs, I would have done this and done it quickly. I NEVER tolerated substandard doctors or medical care back then. Now, unfortunately, I live in a very rural area and the doctors in the city are, uh, different than I am accustomed to. In the DC area, I had thousands of choices in doctors. Here, I had about 20-30 and I've been turned away by over half of them -- because of my neuromuscular disease. I have to have a PCP close by for sudden illness and this guy does fit the bill for that. Finding a doctor that will oversee and coordinate all my issues isn't going to happen as the distance required to get to a larger city is more than I can physically handle.
torontoCPAPguy wrote:Do you have a pulse oximeter like the Contec CMS50E? I know you have it in you and good thoughts are coming your way from here. Nothing but good thoughts.
Yes, I have the 50F. I try to test a couple times a month these days. The last few tests I've done have been very, very good. My levels are staying above 90% all night.
torontoCPAPguy wrote:My apologies; I see now that our afflictions are different entirely. You apparently suffer from a neuromuscular disorder that I am not yet familiar with. I am surprised that they took your breathing difficulty seriously.
No apologies needed. As far as them taking it seriously - my research indicated (after the fact) that trouble breathing at night is the first sign of respiratory problems for someone with a neuromuscular disease. They did take it seriously because they were expecting it as a possible problem. Lucky me.
Yesterday was an incredibly good day for me. I only felt slightly bad and while tired, I was able to function and really didn't CRASH until around 8pm. I haven't had a day like that in MONTHS. So, I asked myself "What was different about TODAY?" There were two major things I could think of:
1. I adjusted the time that I take my pain meds. I have serious muscle pain in my legs and take pain meds in the evening. I WAS taking them around 6 - 7pm, but decided to take them LATER and see if would help with my sleep, perhaps lasting longer into the night.
2. I'm trying to eat something for breakfast earlier and see if it will help with the nausea. I WAS eating breakfast around 8:30 - 9:00, but am trying to eat around 7 or 7:30 now.
I am still taking Mirapex and my neurologist DOUBLED my dosage yesterday since I am able to tolerate it. I am now taking 0.50mg and will take this dosage for about 10 days and see what happens.
I am waiting on test results from a research study to see if we can pinpoint my neuromuscular disease. My current neurologists didn't test for it (because of cost and they didn't consider it a likely possibility) but a research study allowed me to get tested for free. My neurologist asked me yesterday if I had the results yet as he is anxious to find out as well. Testing positive for this specific disease would explain a lot of my problems, plus there's a treatment for it.
I HAVE also noticed that even though the report from my sleep study indicated that as long as I sleep on my side, my IPAP is staying at 14-15, I am waking up (ON MY SIDE) and finding the pressure between 17-19 every time. Pressure that high could be responsible for waking me up. I plan to discuss that with my RT today during my clinical visit.
Despite what "Guest" has said, I am NOT just sitting here complaining, whining and just looking for sympathy. I am trying things on my own, and being aware of what changes help or hinder. Just because I choose to be responsible and NOT adjust my ventilator settings on my own doesn't mean I'm not doing anything.
Edited to Add: Any "snarkiness" in this post is directed at "Guest" and no one else. Everyone else has been wonderful supportive and helpful.