Hey guys! It has been a while since I last posted; I've had my daughter's wedding, then I drove her over 2500 miles to be with her new husband and then drove back home. It has been a crazy few months; but I wouldn't change a thing...because I am alive and happy in the moment! Despite the horrible 'reward' for taking on such a feat-that I knew good and well I should not be doing...but in a way-I had prepared for it-I was able to 'workout' with my horses and strengthen my body before that long journey by vehicle. I could not do that now; however, but am extremely grateful I was able to; even if it cost me physically to do so.
The weird that I am referring to in the title is my brain fog and strange sensation in my skull. It is not buzzing this time; it is different...almost like my brain is 'floating' at times. It is a strange sensation that is truly indescribable-but that is the best that I can do. It is not constant; but it is persistent. I thought it was an inner ear infection; but it's not. When it happens-my eyes stop focusing right; they are sensative to light and there is a slight nausea. I can't focus mentally either-and the 'ADD' symptom starts running rampant. It has become so consistent that I am starting to rethink my 'no more MRI's' statement. I don't really want one; but am tempted at times. With no health insurance-I really don't want to spend our funds on a test that is going to nothing but show what I already know is going on via the 'experiencing of it'.
It won't change my treatment plan-I decided that after my last surgery that there was going to be a limited amount of medical intervention from that point forward. Only what is necessary-and I can't really justify the MRI as necessary at this point.
I decided to share; in hopes that this helps others who are trying to 'figure it out' or are in limbo-where I lived for way too long...so I hope this helps someone and you don't feel alone. Peace be with all of you! Holly
Even tho i wish we weren't going through any of this it's good to see a post from a fellow 'i don't understand what's happening' person. i've had the tingling too in my head and buzzing in my whole body at times. I understand about not wanted or being able to justify the mri. I totally get it. can i ask what you had surgery for? no worries if you don't want to post. In the last year i had surgery too (a grapefruit size fibroid) so had partial hysterectomy. oddly enough i actually felt pretty good for a few months after surgery. Then i had the latest - legs cramps, dizziness and fatgue again. seems to be lifting a bit after almost 2 months. i caved to the mri - haven't heard from neuro and said i'll wait to discuss all at my appt with her in jan. figure she'd call if anything was up. How are you today?
Congrats on your daughters wedding!
Suz
I had a thyroidectomy which ended up being a parathyroidectomy as well (on accident). I had nodules on my thyroid that were hypervascular and they diagnosed me with Hashimotos (they said it developed from the MS-but I don't know about that-it was an accute onset though).
I always try to keep an upbeat attitude-your emotional well being makes a huge difference on how intense pain and other symptoms can be. Waiting for the neurologists and the constant testing and retesting does take a toll. I'm sorry for anyone who has to go through it. The one thing I would change; how absolutely fixated I became on getting diagnosed. It did nothing for my symptoms but make them worse. It is really hard however, to sit back and let go of it.
There are days when I don't even think about MS-even when I'm having an exacerbation. I just live my life as if I don't have it (not literally) and make adjustments where I need to for it. I try not to point to it; even with myself. I associate the pain with 'normal daily life' and try to manage it as best I can-when I know it will becomes overwhelming-I take something for it ahead of time-so that I don't get 'slammed into the wall' with it. I live proactively as much as it is possible; reactively-you always feel like your trying to keep up.
Biggest lesson I've learned has been to let go of my rigid schedules and organization of things (to the point of being compulsive almost). That was really hard given what I used to do for a living. But, if something doesn't get done-'oh, well'; there is always tomorrow. That doesn't mean that I don't care-I just don't get worked up about it and beat myself up over it anymore...I know; every day-I did the best I could. I can live with that.
God Bless! I hope things go well for you and you get some answers soon. It really does stink having to wait for it...
oh my - You're body has been through so much.
you are very brave and it's good to hear the reminder to remove the focus from the dx - many blessings back to you