Hello all, im a newbie, like to introduce myself!

[Guest guest]

Hi all, I am new and im not even sure if I should be here!! I feel

bad as we dont have a diagnosis of anything yet, but I have felt for

some time that maybe we should be looking at mito.

I have always felt though that mito was considerably worse than my

children and I, but i beleive that sometimes that can be the case?

Well probably initially anyway?

I have three children : joshua 6, Kayne 4, corbyn 2. And am pregnant

with my fourht child, due in september.

has autism (mildly now), asthma, excema, GERD, unexplained

tachycardia/palpitations, small stature/poor weight gain, metopic

ridge, diastatis recti, very small features, see-through skin, 40+

food allergies, IGE 2500 and rising, temp. regualtion problems,

frequent bone pains and dizziness, hyper extensible joints, flat feet

10th% or below height/weight.

Kayne has aspergers, seizures (suspected not proven on EEG)on meds

for, asthma, GERD, temp. regualtion problems(excessive sweating),

pychosomatic? polydipsia (drinks excessively), frequent dehydration,

cyclic vomiting, metopic ridge, prominent occiput, pale white skin,

poor teeth coating?, diastatis recti, unbilical hernia, hyper

extensible joints, flat feet, very loose/smelly stools since birth,

had " smell " as baby, also hoarse as baby. 50th% for weight/height.

Corbyn has ataxia, hypotonia, tremor, blepahrospasms, myotonia (they

think), also possible seizure activity. Also suspect a tic

disorder.GERD, diastatis recti, just started with excessive urination

and thirst recently, also had " smell " as baby, hoarse voice as baby.

98th% for weigth, 120th% for height.HUGE!!!!

I have recently developed what they think may be early phase MS,

numbness, tingling, weakness, other weird stuff, mostly gone whilst

pregnant!!! Hooray!!

So thats us in a nut shell!! in my family we have a history of ppor

weight gain or failuer to thrive, asthma, excema, a few with mitral

valve prolapse, factor v leiden (me also)clotting disorder, multiple

autoimmune disorders in my mum, she also has hyperextensible

joint,flat feet, kindney congenital kink also starting to fail now,

GERD, and was not expected to live when she was a baby, her father

was also the same apparently.

So its great to meet you all, i will mostly lurk, as I have no real

knowledge to give to the group as yet, but an awful lot to learn

about, esspecially if I really wan tto get my kids tested, I will

have to know a lot, as over here in Australia there arent many

specialist who deal in this area, well not in Perth anyway. Not to

mention the issue of actually getting them to believe me!! They tend

to want to blame me for our childrens problems, as they have so

many " weird " things happen, with no explanation, all tests so far

normal, but symptoms indicate otherwise!!

Thanks and hi again!!

Cindy

[Guest guest]

Welcome to the group. Please feel free to ask as many questions as you need around here. It is amazing to me that almost everytime I don't understand something, someone around here does. This disease is so complex, I don' t think I will ever totally understand it. Congrats on the new baby. What day are you due in Sept.? Not trying to be nosey, but our little boy is due Sept. 20 (he is our 5th child, my fourth pregnancy.)

[Guest guest]

Guess you don't have to respond to my last e-mail asking to tell about yourself. I didn't notice this posting before I wrote that one. I wanted to mention the things you mentioned yourself having also can be symptoms of Mito. I was misdiagnosed with MS for over 13 years before my 4 year old was suspected of Mito. I had many of the things you spoke of. Numbness, tingling, weakness, exhaustion, dizziness, temporary paralysis of different places, visual problems, sensory issue disturbances...can all be MS or Mito related. It can be very confusing to be sure. I hope you are able to get some answers. Don't feel bad about coming before diagnosis as there are many that do not have a firm diagnosis on the list. Feel free to ask us anything and we will try to help you. Darla Hello all, im a newbie, like to introduce myself! Hi all, I am new and im not even sure if I should be here!! I feel bad as we dont have a diagnosis of anything yet, but I have felt for some time that maybe we should be looking at mitoI have always felt though that mito was considerably worse than my children and I, but i beleive that sometimes that can be the case? Well probably initially anyway?I have three children : joshua 6, Kayne 4, corbyn 2. And am pregnant with my fourht child, due in september. has autism (mildly now), asthma, excema, GERD, unexplained tachycardia/palpitations, small stature/poor weight gain, metopic ridge, diastatis recti, very small features, see-through skin, 40+ food allergies, IGE 2500 and rising, temp. regualtion problems, frequent bone pains and dizziness, hyper extensible joints, flat feet 10th% or below height/weight.Kayne has aspergers, seizures (suspected not proven on EEG)on meds for, asthma, GERD, temp. regualtion problems(excessive sweating), pychosomatic? polydipsia (drinks excessively), frequent dehydration, cyclic vomiting, metopic ridge, prominent occiput, pale white skin, poor teeth coating?, diastatis recti, unbilical hernia, hyper extensible joints, flat feet, very loose/smelly stools since birth, had "smell" as baby, also hoarse as baby. 50th% for weight/height.Corbyn has ataxia, hypotonia, tremor, blepahrospasms, myotonia (they think), also possible seizure activity. Also suspect a tic disorder.GERD, diastatis recti, just started with excessive urination and thirst recently, also had "smell" as baby, hoarse voice as baby. 98th% for weigth, 120th% for height.HUGE!!!!I have recently developed what they think may be early phase MS, numbness, tingling, weakness, other weird stuff, mostly gone whilst pregnant!!! Hooray!!So thats us in a nut shell!! in my family we have a history of ppor weight gain or failuer to thrive, asthma, excema, a few with mitral valve prolapse, factor v leiden (me also)clotting disorder, multiple autoimmune disorders in my mum, she also has hyperextensible joint,flat feet, kindney congenital kink also starting to fail now, GERD, and was not expected to live when she was a baby, her father was also the same apparently.So its great to meet you all, i will mostly lurk, as I have no real knowledge to give to the group as yet, but an awful lot to learn about, esspecially if I really wan tto get my kids tested, I will have to know a lot, as over here in Australia there arent many specialist who deal in this area, well not in Perth anyway. Not to mention the issue of actually getting them to believe me!! They tend to want to blame me for our childrens problems, as they have so many "weird" things happen, with no explanation, all tests so far normal, but symptoms indicate otherwise!!Thanks and hi again!!Cindy

[Guest guest]

cindy,

welcome to the group. It does sound to me like possible mito with

your kids but please remember it is quite often maternally inherited

so if you are having MS symtpoms, you should probably be checked too!

I have had weird issues for about 10-15 yrs. and only have a

probable mito dx thus far. My daughter had complex III/IV

mito, bone marrow failure,PDD-NOs and the list goes on and on. She

too is off the charts for her age (4y.o and 56lbs and 44 in.). No

one know s why. It seems with mito a lot of times their really small

or big!My other two (13, and amlost 3) are going to be seen in

September for eval.

Anyways, welcome again, Dawn