I'd been napping pretty regularly and getting to bed early, but I guess after my meeting the the "big kahuna neurologist" earlier this week, it just set me off - his saying I didn't have MS. So I thought, okay, if I don't have it, then I don't have to waste any more of my daylight hours on naps - hurray!! So for the past two days I did not nap - oh, it was delicious! I could get lots more done that way - I got my car inspected etc. I also got to bed just a little bit later on those two days without naps. I was beginning to think I was a normal person again . . . until this morning after I had been working for about two hours and there appeared a sudden WALL OF FATIGUE AND WEAKNESS! And I wasn't breathing very well either. So I brought out my CPAP machine and actually had to do my computer job while using my CPAP for air. My pulse oximetry numbers slowly began to rise from the 50s and 70s back up into the 90s! But I don't like having to use my CPAP during the daytime so, therefore, I am going back to regular napping. From now on, my nap is going to be an automatic block of time on my schedule.
Never underestimate the power of napping!! And don't feel guilty about not using the nap time for chores that are screaming to be done.
you need to keep resting... I know it's frustrating not have any answers to what it is... if it's not MS...then what is it? Did the Dr say what it might be? Can they give you any direction that they could help you with... YOU rest up and when you feel up to it.. I would ask what they thought you should do NOW... if not MS..then please get you answers for help...
Well, the neuro who said he didn't think I had MS really didn't do a fair inquiry - so I don't accept his opinion as being valid. His mind was made up about things before I walked into the room - just because of my age - being opposed to people older than 40 coming in for an MS diagnosis.
So I am still hoping it could be MS. But I also just made an appointment to be evaluated by the ALS specialist in our area since MS and ALS are like "kissin' cousins" - very similar symptoms! I couldn't get in to see the ALS specialist until January (since that was his first opening - actually there are way more people with ALS than most believe).
Thank you so much for your concern. I see you have PPMS so you certainly are aware of the necessity of napping! Maybe someone just starting out with MS, a relapsing/remitting could get by without naps - but not progressives! If I do have MS, I'm pretty sure it would be a progressive type.
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