Hi All

June 27, 2003

Louise

I am glad you were able to post and tell your story. Many of your symptoms

sound all too familiar.

One thing that jumped out at me was the panic attacks and your sensitivity

to light. Are you also sensitive to noise and touch? My son, with mito, is

very sensory sensitive and has what are very like (many even) panic attacks.

He can easily become overwhelmed in social situations, not from the people,

but from the sensory input. He has been able to deal with this better since

coming to understand what he is actually dealing with. When he was young,

the sensitivity to touch seemed to be the worse, but that is because I could

see it. He can tolerate firm touch, but not light touch now. As he got

older, the thing that caused him the panic attacks was the noise

sensitivity. He would often have to leave a restaurant because of this and

go sit in the car. He has learned that focusing on a book or something else

will help him to control it. He still has problems when tired and will take

frequent bathroom breaks to find less stimulation. He use to not make eye

contact and we discovered it was because of visual sensitivity. Now when in

a restaurant, we always sit in a booth and tend to go to those places that

have tall backs on the booths and dimly lit. He is very sensitive to bright

sunny days. He says that all these things hurt.

Sorry for the detail, but I thought it might help. It is felt this is due to

his mito.

laurie

>

> Reply-To:

> Date: Fri, 27 Jun 2003 06:56:55 -0000

> To:

> Subject: Hi All

>

> I'm sorry for the delay introducing myself, but social phobia is one

> of my many & varied symptoms (listed later) & i had no idea where to

> start!

> I am the eldest daughter of one of your members, Lynne Hill & so far

> I have been unable to get a diagnosis that i'm happy with, at the

> moment I'm diagnosed as " depressed & agoraphobic " despite having

> seen the same neurologist that diagnosed my mum with mito. I have

> been having problems since i was 6 or 7 years old when everyone ( my

> teachers, parents & child psychologist) thought i was just " lazy "

> & " extremely bright "

> Although my symptoms were less then, I was already having bowel,

> concentration and depression problems (including social phobia).

>

> I'm going to stop there with the history, coz it would take all day,

> but feel free to ask me if there's anything you want to know.

> Following is a list of my symptoms so far, I find I keep adding to

> them as i find out that things I thought were " just me " are actually

> not normal.

>

> SYMPTOMS:

>

> Depression & Mania: I'm on a permanent emotional rollercoaster. I

> used to take Prozac but I found the side effects worse than the

> depression (the muscle weakness in my lower back was so aggravated i

> couldn't walk for more than half an hour before my legs were

> collapsing with the pain) so I stopped taking it. My depression

> comes with...

> Social phobia. Basically, new people & places give me panic

> attacks of varying severity.

> Panic attacks. (of varying severity) not all associated with the

> phobia. Sometimes they're so bad it feels like my heart is trying to

> get out of my chest.

> Sudden mood swings, usually unprovoked or unreasonably severe

> Manic episodes, sometimes lasting for days or weeks. This is more

> than just enthusiasm & feeling good, it's like an amphetamine rush,

> my mouth gets hardwired to my brain & i do & say really silly things

> Loss of concentration & a feeling that things aren't real. I can't

> concentrate enough to read a book or watch the T.V. (or order a

> meal) & I feel like I'm living in a dream. I have to ask questions

> or check things (like have I got my front door keys) over & over

> again before the answer sinks in.

>

> Migraines. I get them when I'm menstruating, or if I've been tired

> but still been energetic, or if I lay in bed after I wake up, or if

> I try to go to sleep when I'm not tired enough or on a long drive,

> or under strong overhead lighting. Also some foods & drinks,

> noticeably red wine, seem to cause them too. My migraines come

> with...

> Aversion to light, it hurts.

> Headrushes & fainting I used to actually black out & lose

> consciousness, but I'm learning when to get my head down.

> Occasional diarrhoea & sickness

> Mild visuals (usually) Like pulsing clouds of colour in the dark,

> or in more severe migraines, pulsing black clouds in the light &

> brilliant colours in the dark

>

> Muscle weakness & twitching:

> It actually seems to be a lack of stamina rather than weakness,

> but I've experienced both.

> Sometimes folding wet shirts or towels makes my arms & shoulders

> feel like I've done too many pushups, & walking makes my legs feel

> rubbery & not quite under control. Occasionally my legs will just

> refuse to bear my weight, or my fingers will refuse to hold a cup,

> or my arm will refuse to lift it. My muscles sometimes start to burn

> after a very short time.

> I get twitchy muscles all over, the same muscle will have twitchy

> episodes lasting for minutes or hours over days or weeks, sometimes

> i will have 2 or 3 on the go at the same time. I also get a weird

> feeling, (usually in my calf muscles but not confined to them) like

> I'm being poked, or a cramp is about to start. This all gets worse

> if I'm feeling run down.

> I get quite a lot of cramps, usually if I stretch but not always

> for an obvious reason. I get very painful menstrual cramps,

> sometimes they seem to be immune to painkillers.

> I also get a lot of trapped nerves, mainly in my neck/shoulders.

> Eye strain, if I'm tired or run down or if I've been watching T.V.

> or reading my vision will blur, i have glasses but they have never

> prevented the blurred vision

>

> Palpitations:

> I'm getting them more often than i used to. The first time it

> happened I was 18.

>

> Spastic movements / clumsiness:

> I'm forever lurching into things & banging my knees, shins &

> elbows, especially while I'm waking up (it can take 3 hours or more

> for me to be " with it " after I wake up). I'm always banging my knees

> on the furniture & my elbows on the door frames, I can't have

> furniture with sharp corners.

>

> Fatigue & insomnia:

> Sometimes i can't get to sleep, sometimes i can't stay asleep, my

> sleep is often disturbed for weeks at a time. I've always had

> trouble getting to sleep, it usually takes me an hour or two on a

> good day.

> Other times I will find I'm sleeping for 12 or 14 hours a day,

> sometimes more.

> If I get cold it makes me very tired & sleepy. I seem to get cold

> a lot, even in the summer when other people are warm enough or even

> too hot.

> I've noticed that the fatigue makes everything else worse

>

> Infections:

> I tend to go septic with very little excuse unless I'm very

> careful. I also get cystitis if I'm not constantly vigilant. I drink

> a lot (mostly tea) because if I don't I tend to get cystitis more

> easily.

>

> Eating problems:

> I found that eating little & often is best for me. If I try to

> eat normal portions it makes my belly bloat & makes my bowel worse.

> Eating makes me very tired sometimes. I'm also a very slow eater. I

> tend to go for long periods without eating, sometimes a day or two,

> because feeling hungry doesn't really bother me, I tend to forget

> about it until I'm shaking & feeling faint. I also find that if I'm

> feeling " hyper " i get hungry but when I've cooked, or bought

> something to eat I can't finish it, sometimes not even half of it,

> occasionally I can't even start to eat, even if I haven't eaten that

> day or the day before.

>

> Irritable bowel (bloating, constipation (kind of)):

> Usually I won't be able to go for days & my intestines feel like

> they're full of lego bricks (any movement or jarring hurts), then

> when i do I'm constipated for the first half, & the rest has the

> consistency of toothpaste. I've had hemorrhoids since I was 13 or 14

> because of this.

> Other times It will be more like lots of pebbles (individual or

> stuck together like clay). This usually blocks the toilet.

>

> Out of the blue stabbing pains:

> These can be very painful, sometimes bad enough to stop me in my

> tracks. They are not confined to any particular part of my body, but

> i get them most often in my head & face, hands, feet & lower abdomen

>

> Joint pain:

> When I was 11 or 12 they told me it was " growing pains " . When I

> was 16 or 17 my doctor did blood tests for arthritis & told me that

> if they were negative it was nothing to worry about (they were

> negative). About a year later he told me it was probably R.S.I. & i

> lost my job over it. I used to have most problems with my wrists,

> hips, knees & ankles, but at the moment my hands are giving me the

> most trouble.

>

> Skin Problems:

> I get dry skin & what my Mother tells me is a form of eczema, I

> keep forgetting to ask when I visit my doctor. I also get cold sores

> & some very painful & long lived spots. All of this is worse when

> I'm run down.

>

> Miscarriage / infertility?:

> I had a very messy miscarriage when I was 17 & I had to have a

> scrape to get rid of the foetus and I bled a lot. Since then I have

> used no contraception and have never been pregnant since, as far as

> I know. When I was about 25 my doctor found I had an infection (non

> specific uterine) that may account for this though. I was prescribed

> a course of antibiotics which i took. Unfortunately, my phobia has

> so far prevented me from seeking further medical advice on this

> matter.

>

> OK, that's me in as small a nutshell as i could manage. Sorry it's a

> bit " epic " & I hope it's useful to someone.

>

> Louise Matchett

>

June 27, 2003

Welcome Louise,

I do not have any real answers for you but alot of your symptoms my 10 year

old son has. I found it interesting that others described you as a lazy and

extremely bright. He got help for his bowel problems by taking the Qgel.

You may have already tried that. He also eats mostly chicken. During the

summer now every week it seems some organization is having brat fries (a

German tradition here in Wisconsin)--anyhow, he can barely finish one even

though he weighs 97 lbs and most kids his age eat 2 or 3. Then he feels

sick.

He also has the social phobia and lately I have been noticing more the

depression.

Well, sorry I could not help more but you are not alone and it is not all in

your head.

Janet Sample