Annie,
I take HCTZ to prevent migraines, which I know depletes potassium. By blood pressure is consistently excellent. My potassium tested low-normal, probably because of the diuretic, so I take a potassium pill in the morning, and usually have something potassium-rich with lunch. I just can't for the life of me connect my episodes with anything I eat or don't eat, even though the time of day is so consistent. Calcium...yes, I typically have some with each meal. How about this: I'll take that potassium pill in the late afternoon and see if it makes me weaker or stronger. So hard to tell, since my symptoms come in waves by the week as well as by the day.
I'm trying to get my aunt to really get on this. She is better, but still having balance trouble and double vision, and they're sure it's not a stroke. She tested negative twice for MG (but then, so did I). I'm trying to get her to talk to them about CMS.
If this is a CMS that my aunt and I both have, then certainly my mother would have it, too--and at age 69, she has no symptoms. Neither do my seven siblings. Oh! And neither did my mother's parents, though they both lived into their late 80's.
I have a neuro appointment coming up. I will mention my aunt to him. Maybe he'll send me to Mayo. The nice thing about having three kids in college is that there's always plenty of money for things like trips to Mayo: I just take it out of their tuition
.
Now, listen: if there's every something I can do for
you, let me know! I proofread, edit, format, and photoshop.
Abby
Quote:
Originally Posted by AnnieB3
Abby, There are so many CMS's and some that are in COMBO with MG. There's Congenital MG with acquired MG developing in the 4th decade, from the WUSTL website. That is treated with immuno's.
Do you know what your HLA's are? I had mine done when I was tested to see if I was a kidney match for my Dad. You can do too much testing to figure something out but I really have to wonder if you have a CMS and MG. I've wondered about that myself. I've had symptoms since shortly after birth. I have MG antibodies but did not get worse until after my B12 deficiency.
Have you tracked what your potassium and sodium intake are throughout the day? What about calcium? Do you get a consistent "dosing" of that through the day? If there is any kind of channelopathy, swings in intake could potentially effect that. The next time you have a sudden weakness episode, try eating a few potato chips.  I know that sounds silly but it's not.
How is your BP?
Does the sudden weakness correspond at all with the taking of other meds? Or is it more random?
I'm still thinking about all of this. |