I find this disease extremely isolating as I tend to get sick anytime I try to go out and socialize. One thing I do have consistently in my blood work is a high MCV levels even though I am on a high daily dose of Vitamin b….curious if anyone else has seen this in their blood work. Thanks so much.
Hi Hammmick, and welcome from me too!
I don't have as big red blood cells as you. In fact mine are "perfect size".
As far as blood cells go, I often have too low lymphocytes or leucocytes overall (white blood cells, WBC), but not low enough that my docs worry, let alone explain anything, same with my 4-5 other bloods which are way out of range, but my docs just say yeah, that can happen.
As you know about B12 and B9 I guess you've had all the other things done like liver and thyroid checked?
And is the daily high dose of B12 with B9 enough to get those up in your blood?
And is the B12 one or all of the 3 good types or the normal one, which isn't as effective?
If not, I'd consider getting 5mg or 10mg of a good type of B12 injected, that rockets the B12 levels.
Is the MCV only slightly above the normal range, or are your docs diagnosing macrocytosis?
I manage not to feel at all isolated by keeping the stints to very short quality time, and interacting online, carefully dosed, often task-switching as needed.
I keep my socializing down to what I tolerate, which is for many types of social interaction often only 5 minutes a go and I may need to recover from that for an hour. With people I'm comfortable with I once managed a few hours by taking a half hour break every half hour. Recovering for a few days. Now it's only best friend that I can interact with for up to an hour.
However I spose I'm lucky. I don't suffer, cos wife and pets and some table tennis every day is enough for me. I spose my introverted side allows me to cope well with being alone. Today I don't feel like contact with anyone much. Always others are wanting to socialize more with me than I with them. But they are very understanding when I say: sorry, talking is hurting today. I would praps suffer if I didn't have my wife, but I'd definitely look to living with 2 or 3 others, like I've done a lot of my life.
A reason for still having good contacts with friends, family, acquaintances is probably that I don't need to moan much and have a good verve, at least for short times. And that's due to my attitude of doing what I can, accepting what I can't.
Someone with another condition asked the other day if I'm not bored not able to go to work any more. No, I will always find loads of things to do, workarounds for those I can't do anymore, always have too much.
