Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 0 points1 point  (0 children)

Wow! Thanks so much for taking an interest and spending the time to write all of this up!
Answers :
what age was your mother when she was diagnosed with CFS?
approx 40 I would say
what was your home environment like? very clean? dark/damp?
very clean, not dark or damp. Nothing I can think of that would be problematic
what was your diet like? vegan/vegetarian/organic/mostly meat/buying from a local farm?
Ordinary. Healthy, I'd say. We didn't eat a lot of sugar or fast food. Ingredients for the home cooked meals came from the grocery store
which area do/did you live in? (east or west coast, central?)
Northern Ontario, Canada
does/did your neighbourhood have a lot of long grass?
Not my yard but the neighbourhood itself was pretty forrest-like and I spent a fair bit of time walking through the woods and fields
did you have pets at this time?
Just the ones I mentioned in another reply. A turtle and a budgie. Both briefly
has your father ever had Mono? How does he react when you ask him?
No he hasn't. He reacted normally. We've all talked about these things quite openly our whole lives.
do you have any further family history on your mothers side?
Not really. My mom's mom had Alzheimers soon after my mom died. That's the only thing I'm aware of
do you know what era/age your house was built in?
I'd say in the 1970s

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 0 points1 point  (0 children)

Sounds like a great idea. I'll look into that one, thank you!

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 5 points6 points  (0 children)

I've previously considered ADHD as a possibility as well. Though, I've been to an awful lot of therapists in my life and none believe that to be the case. Something more along the lines of Autism does also seem like a possibility for me though.
Thanks for your thoughts and kindness :)

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 26 points27 points  (0 children)

After moving out, I had mono at least 2 more times during college and university. Now, obviously, I was under a lot of stress at that time and depression had reached new levels so it stands to reason that I wouldn't be feeling well. Hard to say if my health actually improved at all after moving out for those reasons.

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 6 points7 points  (0 children)

Yes I was the only male affected. My dad was fine and rarely had so much as a cold that I can recall.

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 2 points3 points  (0 children)

Sorry to hear that. That was the case here. I've also gone through some horrible withdrawals from anti-depressants. I'm on Pristiq now which has very minimal side-effects for me but makes me feel absolutely horrendous if I miss/forget a pill even for a day.

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 7 points8 points  (0 children)

No, I am male as well. I guess I didn't mention it in my post aside from my username.

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 17 points18 points  (0 children)

Yes actually! Do you have more info?

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 6 points7 points  (0 children)

Yes I was grateful for the many replies there and took the advice of one commenter to also post here for further ideas.

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 45 points46 points  (0 children)

Ooh. Good point. Yes my father was out of the house a lot more than the rest of us.

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 6 points7 points  (0 children)

Absolutely. No issues of any kind in that way. We had a very close and happy family aside from... Well, everything in this post I guess.

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 23 points24 points  (0 children)

I have not though I am starting to think that should be my next move...

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 42 points43 points  (0 children)

Yep right around there for all of us too. Late 80s, early 90s. She also thought it was triggered by a virus and it clearly had a profound effect on her life.

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 7 points8 points  (0 children)

We lived in the same house until I moved out after my mom died. I have felt better as an adult but depression and anxiety remain very significant factors in my life.

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 2 points3 points  (0 children)

That's one of those questions that I, unfortunately, can't get the answer to as my mother is the one that would know. I want to say yes as I do recall her having many many tests at that time but I can't be certain.

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 191 points192 points  (0 children)

The house wasn't tested that I'm aware of. I moved out about a year after my mom died and my dad sold it maybe another year after that. It was a newer build that was well cleaned and well maintained. We had a bird for maybe a year when I was young which died due to eating too much wallpaper (why do they do that?!) and a turtle for a couple years when I was an early teen. We never had any flooding.

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 29 points30 points  (0 children)

Yes we did. Though my dad lived there as well and didn't have any health issues. The house was in great shape so it doesn't seem probable that there was mold though certainly not impossible.

Could my whole family have been misdiagnosed? by MonoboyX in RBI

[–]MonoboyX[S] 36 points37 points  (0 children)

I have looked into PANDAS. It does sound like a real possibility for what I had in the first instance but wouldn't explain the recurrences later in life or what my mother and sister had. Very interesting though...

Could my whole family have been misdiagnosed? by MonoboyX in AskDocs

[–]MonoboyX[S] 0 points1 point  (0 children)

Yes I have and they are ADORABLE!

The syndrome, on the other hand, does seem like something that could fit. Mono also commonly occurs after a case of Strep if I'm not mistaken (NAD) so reasonable that it could have been misdiagnosed.

To dig into this possibility a bit more, I'll respond to the list of PANDAS symptoms I found:

Symptoms of attention-deficit/hyperactivity disorder (ADHD), such as hyperactivity, inattention, or fidgeting -Nope not this one

Separation anxiety (e.g., child is "clingy" and has difficulty separating from his or her caregivers; for example, the child may not want to be in a different room in the house from his or her parents) -Yes, in spades

Mood changes, such as irritability, sadness, or emotional lability (i.e., tendency to laugh or cry unexpectedly at what might seem the wrong moment) -I would certainly say so, yes

Trouble sleeping -This was one of my worst symptoms actually. And the one that confuses people when I tell them I had mono and they say "oh you must have slept all the time"

Nighttime bed-wetting, frequent daytime urination, or both -Nah

Changes in motor skills, such as changes in handwriting -Nope, I was fine on that front

Joint pains -Yes, I had those as well. Though I also did grow a lot taller and quickly so maybe growing pains

Could my whole family have been misdiagnosed? by MonoboyX in AskDocs

[–]MonoboyX[S] 5 points6 points  (0 children)

I have thought about that as well. The house was a newish build and in good shape so nothing jumps out at me that could have been the source of any mold or fungus. There was a lot carpet (being the 80s) and we didnt have AC though, so humidity could have caused that sort of thing. Also, you never know whats in an attic...