Dear Dr Sclafani,
How about this as a fatigue description?
A mother walking her kids to school. Monday, everyone walks at the same pace. The trip home for the mum is a bit slower. Mum rests.
Walks back to school. Picks up kids, mum has to hold hands with six year old to keep herself moving.
Legs don't want to move, but the mother keeps going, even though after 10 minutes it feels like a marathon runner has hit the 'wall'.
Mum prepares meal, but feels like a person who has had a few drinks. Brain isn't working logically, but feels like it's moving a high speed.
By Wednesday, the mum has to ask someone else to walk the kids and pick them up. She just can't do it.
Walking for five minutes outdoors makes her feel completely drunk, focus has gone, balance is dreadful, spatial awareness non-existant.
This was me. Now my kids are all grown up and I have moved to northwest Spain, where those fatigue symptoms are rare. Why? I just don't know, but I think that humidity plays a part.
I stopped eating gluten and pulses as well. My nerve pain is far worse if I eat bread for more than two days. Why? Maybe I have mild coeliac ataxia, I just don't know.
Another symptom that happens now is that if I'm stressed, I lose all contact with my arms and legs. It's as though they are disconnected from my conscious self.
I can't move them at will - but can move them if I'm push-started!
Last time this happened, I actually couldn't speak for an hour.
I could work, but can't as by the third day, I've run out of energy by then.
I consider myself lucky. I can walk, think and look normal.
My nerve pain without Amitriptyline is like being wired up to a car battery.
I still consider myself lucky though.
A recent MRI scan showed that my MS is non-progressive, but still RRMS. I only get lesions when I relapse. I take Rebif, (for 10 years) which works for me, as it has slowed/stopped the relapses.
I hope this helps to illustrate my life with MS.
You have written that there is no correlation between hypertension and MS.
My first relapse in 1993 involved an attack of autonomic dysreflexia. My BP soared to 260/160 (ish). I almost died and it has left me with labile hypertension, controlled by three drugs.
Is this a sign of CCSVI?
I can't get tested as we just don't have the money, but I'm willing to wait until the picture becomes clearer.
thanks for asking,