MELAS progression rate for 21yo with paresthesia & headaches

[Guest guest]

I am 56yo in Sydney Australia, and have just been diagnosed with mito

myopathy suspected MELAS, and have CPEO, hearing loss, RRF, muscle

spasms - have had a few challenges including myocardial infarct, over

the years but Im not doing too badly. I am afraid for my daughter

though who is 21 and has over the past few years had a lot of

fatigue, headaches and illness, and is currently experiencing numb

legs which sometimes stop her from moving, or if she is walking, make

her sit down for a while so her legs don't give way. She also has

severe dysmenorrhea (not sure if related).

As an aside, she also has from her father's side a vascular disorder

called HHT (Hereditary Haemorrhagic Telangiectasia) which causes

bleeding from weak blood spots throughout the body, mostly, at this

stage of life from her nose and possibly in her GI system. So she is

not supposed to take Aspirin.

We have a mito specialist here in Sydney but visits 3 mths apart.

All my family will be DNA tested but in the meantime I am scared -

how urgent is " treatment " likely to be in her case eg should she get

onto anything which might help prevent a stroke? Are the numb legs

an indicator of this, or what.... is there any predictability if

she does have MELAS eg if she doesn't have a stroke, would she be

heading for a wheelchair and how long does this take? Any advice

would be appreciated. Thanks, Pamela

[Guest guest]

I have similar diagnosis and symptoms, and all I can say is that for

me the worst part was in the first few months to a year after I had

symptoms. I've been recommended to go on aspirin, but I got a

hematologist to check for clotting antibodies and he says I'm fine.

I have bad ulcers so going on aspirin was really a scary thing for me

to think about.

I am still mobile after over 10 years, and recognize I may need an

electric wheelchair in the future, but am delaying it as much as

possible. I was about your daughter's age when I got sick.

Perhaps you can enlist a more local general practitioner to help out

your daughter and recommend some treatments. I'm not a medical

doctor, but NADH (on the mito cocktail list, see the group files) has

helped me a lot. Has she (or you) tried any of the mito cocktail?

Take care,

RH

> I am 56yo in Sydney Australia, and have just been diagnosed with

mito

> myopathy suspected MELAS, and have CPEO, hearing loss, RRF, muscle

> spasms - have had a few challenges including myocardial infarct,

over

> the years but Im not doing too badly. I am afraid for my daughter

> though who is 21 and has over the past few years had a lot of

> fatigue, headaches and illness, and is currently experiencing numb

> legs which sometimes stop her from moving, or if she is walking,

make

> her sit down for a while so her legs don't give way. She also has

> severe dysmenorrhea (not sure if related).

>

> As an aside, she also has from her father's side a vascular

disorder

> called HHT (Hereditary Haemorrhagic Telangiectasia) which causes

> bleeding from weak blood spots throughout the body, mostly, at this

> stage of life from her nose and possibly in her GI system. So she

is

> not supposed to take Aspirin.

>

> We have a mito specialist here in Sydney but visits 3 mths apart.

> All my family will be DNA tested but in the meantime I am scared -

> how urgent is " treatment " likely to be in her case eg should she

get

> onto anything which might help prevent a stroke? Are the numb legs

> an indicator of this, or what.... is there any predictability if

> she does have MELAS eg if she doesn't have a stroke, would she be

> heading for a wheelchair and how long does this take? Any advice

> would be appreciated. Thanks, Pamela