Reply To: MFS & Blood Pressure

My BP has improved significantly, but not back to normal.

MFS, like other peripheral neuropathies, varies in how it affects each of us. I was diagnosed with GBS/CIDP/MFS and still have blood pressure issues since onset in 2008. I measure my BP every morning when I awake while still lying in bed. I find that my BP readings tend to be more representative at this time. I get wider fluctuations during the day sitting and doing work from my wheelchair.

The biggest change in my blood pressure occurs when I transition between lying and sitting (I can’t stand or walk). This used to make me dizzy because of a large variation in BP. The variation is small these days and I don’t get that light headed feeling anymore, but the BP issue remains. Whether my issue is the direct result of MFS or CIDP I can’t tell and neither can the doctors. I have a great deal of demyelination from my GBS/CIDP/MFS and that has something to do with my BP variations.

I hope your BP returns to normal soon. Many members have reported significant improvements from MFS after 6 months or so. This is one of those diseases that can take awhile to recover from, especially if there is myelin damage.

I wish you the best.