Assorted ranting and emergerncy postings since there isn't the "Just Ranting" section on here any more...

[Wombat140]

A lot of the time awful things happen to me and my family that I can't talk to anyone about because I can't think of anyone else I could possibly explain them to.  (One's happened just now.)

Is it OK tto rant in the main forum?  Or would you rather people didn't?

Wombat140

 

 

Edit: By the way other people are welcome to use this thread for this kind of thing too, if that helps.

Edited July 3, 2018 by Wombat140

[MomWithOCDSon]

I'm guessing that "Just Ranting" section got deleted because it wasn't being used much.  Or perhaps someone took to ranting about a specific doctor or caregiver, and it wasn't viewed as constructive or appropriate?

Whatever the case, though I'm not a moderator, I'd say rant away, if feeding off some of that negative energy will help you feel better!  We all need to blow off some steam now and again!

[Wombat140]

Hiya (digging this up for no discernible reason, I'm just working through a lot of old e-mails because I'm angry).  Well, thanks, basically.  Thanks for being understanding.  You know how it is with PANS... problems that wouldn't even make sense to anyone else.  Not now,  I can manage right now, I think, but I probably will rant at some point, now I've remembered the idea!  :-D

[Wombat140]

What do you do when you know you're attention-seeking but you don't know how to stop?  When something has happened that sent me into a real flap and people are pushing me away because they're in a hurry or something, I just do all kinds of random frantic loud things and I can't stop myself, it just seems to come up from my toes and I can't hold it in for more than a few seconds.  This afternoon I picked up a pot of daffodils and hurled it across the garden.  It feels like being expected to sit quietly and not make a fuss, although the house is on fire.

 

Edited June 7, 2018 by Sheila
Sheila edited and sent a note to Wombat140

[Wombat140]

I feel awful

The compuslions went all wrong and I feel awful

I'm on fire

I just want to scretam and I'm not allowed to anywauy

What do you do

Do you think there's any chancer I wwill ever feel all right again?

And whay should anyone ever listen to me again, if I am all right again, and if none of this was ever important?

Edited July 3, 2018 by Wombat140

[MaryAngela]

Wombat140–

I am sorry that you are still suffering.  We felt hopeless with my son’s situation, but he is much better now.  You’ve mentioned that you don’t have access to IVIG.  My son did benefit from a very low dose of Prozac while we were waiting for IVIG.  We had tried it in the past and it was disastrous.  Last year we tried it again, but at a very low dose, and he had an almost immediate benefit.  The key is that he cannot tolerate the “therapeutic” dose.  

[Wombat140]

Nah.  I have OCD issues about SSRIs.  I've actually once tried forcing myself to take it anyway, but it was a disaster.  (Yes, tiny dose, 2.5 mg or something like that.)  Every time I thought "Well, things seem to be OK, nothing life-ending seems to be happening", eve nthings that aren't usually a problem, I'd think "Is it really OK, or is it just the pills making me think it is?"  I just becamse barely able to move with fright utnil two days had passed and I could feel fairly sure it was out of my system.  Caused far more trouble than it could surely ever have solved.  So probably not a good idea.  Unfortunate, but there it is.  (I sometimes think it picks these things deliberately.)

Thanks for advice, though, and just for answer, it makes me feel better. Kind of feeling better now, with help of my mum and a random online pal.

IVIg may not be as impossible as we thought, I've got a new doctor who is far more relevantly qualified/authorised than any of the people I've been making do with for the lastseveral years and seems to think it's not impossible he might be able to fix it up.

[MaryAngela]

Have you ever tried NAC?  My son had an almost complete remission of symptoms that lasted 7 months once. This was in 2015.  We were using a high dose of NAC. He was taking 900 mg 3x daily.  At that time, he also took fish oil, a high dose of B6 and magnesium.  He probably only weighed 65-70 lbs then.  Dose is probably much higher for an adult.  We saw dramatic improvement after 3 weeks.  

[bws1565]

You can also try to take the vitamin EMpower by True Hope.  I've heard it does wonders for all kinds of emotional issues....You can get it either from the company in Florida, or on amazon.

 

 

[Wombat140]

Thanks both of you.  

I tried NAC once, years ago, and things seemed to get worse - though I don't remember how much I was taking.  LNN  (formerly LMM) has a theory that people who have a mutation in the CBS sulphur-processing gene are the ones who don't respond well to NAC, which contains a lot of sulphur - and I know I do have that, at halest half a one (+/-)

New doctor's put me on daily ibuprofen yet again, which is a relief - I never like to start that on my own initiative because after a while I always start to get stomach bleeding and I don't know how long it should take to recover after that, but honestly I was already considering it by then, things were just so sticky. 

I'm already taking a multi (Holistic Health All-in-One), but I haven't been on high dose B6 for ages, actually, maybe I should get some of that, I used to like that stuff. 

When you say magnesium, Mary Angela,  d oyou mean magnesium and calcium, or magnesium alone? 

[MaryAngela]

My son took just Magnesium, but you’re right...I believe there is some benefit to taking it with calcium.