Hi from Tara - muscle spasms and bladder issues

[Guest guest]

Hi all,

Sorry I haven't been around for a while. Things have been pretty bad in this

neck of the woods.

My son Rhys (now 7y.o.) has been diagnosed with autism, severe depressions (he

tried to kill himself a couple of times) and OCD. He has also been having a lot

of health issues and is facing two rounds of surgery in the next couple of

months. All thi alone has taken it out of us as a family.

On top of that, I have been facing a lot of health issues while trying to stay

working (thank God for understanding employers). I had my port-a-cath implanted

in March and it has been great. I have been having weekly IV therapy at home and

when I start to feel crashy. It seems to be helping to flush the crap from my

system and keeping me on a more even keel. It is fantastic not having to worry

about IV access any more.

My muscle spasm and contractures are getting really bad despite high doses of

Valium, clonazepam and quinine. Any ideas? Help!!

I am also having this weird symptom where my urinary system is shutting down

completely for 1-2 days each week or so. The scans show no fluid in the kidneys

or bladder. I blow up like a balloon with fluid and discharge a lot from other

places (yuk). Then it just seems to fix itself. This has been happening for two

years, but is becoming much more common. Doctors have no ideas. Has anyone heard

of something like this?

Sorry for the long post. I look forward to being a more active part of the

group again.

Hi to all the new members.

Love,

Tara Collyer (Brisbane, Australia - Mito, complex 1 deficiency)

This message was sent through MyMail http://www.mymail.com.au

[Guest guest]

Tara

I am so sorry to hear about all the issues you and Rhys have been dealing

with. It must be hard on all of you to deal with so much all at once. You

will remain in my thoughts and prayers.

Have you seen a nephologist for the kidney issues? Have they thought about a

trial of dialysis? My guess (and this is only a guess) is that low energy

makes the kidneys malfunction and then with increased energy, they return to

functioning. My neighbor had kidney failure following a series of seizures

because of muscle break down. Once he had dialysis for a few days, they

started working again. Just some things to think about.

Please let us know how things are going when you can.

Hugs,

laurie

>

> Reply-To:

> Date: Sun, 2 May 2004 9:57:29 +1000

> To: adultmito >

> Cc: >

> Subject: Hi from Tara - muscle spasms and bladder issues

>

> Hi all,

> Sorry I haven't been around for a while. Things have been pretty bad in this

> neck of the woods.

> My son Rhys (now 7y.o.) has been diagnosed with autism, severe depressions (he

> tried to kill himself a couple of times) and OCD. He has also been having a

> lot of health issues and is facing two rounds of surgery in the next couple of

> months. All thi alone has taken it out of us as a family.

> On top of that, I have been facing a lot of health issues while trying to stay

> working (thank God for understanding employers). I had my port-a-cath

> implanted in March and it has been great. I have been having weekly IV therapy

> at home and when I start to feel crashy. It seems to be helping to flush the

> crap from my system and keeping me on a more even keel. It is fantastic not

> having to worry about IV access any more.

> My muscle spasm and contractures are getting really bad despite high doses of

> Valium, clonazepam and quinine. Any ideas? Help!!

> I am also having this weird symptom where my urinary system is shutting down

> completely for 1-2 days each week or so. The scans show no fluid in the

> kidneys or bladder. I blow up like a balloon with fluid and discharge a lot

> from other places (yuk). Then it just seems to fix itself. This has been

> happening for two years, but is becoming much more common. Doctors have no

> ideas. Has anyone heard of something like this?

> Sorry for the long post. I look forward to being a more active part of the

> group again.

> Hi to all the new members.

> Love,

> Tara Collyer (Brisbane, Australia - Mito, complex 1 deficiency)

>

> This message was sent through MyMail http://www.mymail.com.au

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Tara,

I am SO sorry to hear that things continue to be so very tough for your

family.

I'm glad the port-a-cath is working for you. At least that is a good

thing for you. I can't say I have bladder issues anywhere to the point

that you are having, but I do know that my kidneys and bladder work

better on the weekends when I am not working OR tying to work around the

house. I agree with Laurie about you seeing a kidney doc.

Hugs to you and all,

tarac@... wrote:

>Hi all,

> Sorry I haven't been around for a while. Things have been pretty bad in this

neck of the woods.

> My son Rhys (now 7y.o.) has been diagnosed with autism, severe depressions

(he tried to kill himself a couple of times) and OCD. He has also been having a

lot of health issues and is facing two rounds of surgery in the next couple of

months. All thi alone has taken it out of us as a family.

> On top of that, I have been facing a lot of health issues while trying to

stay working (thank God for understanding employers). I had my port-a-cath

implanted in March and it has been great. I have been having weekly IV therapy

at home and when I start to feel crashy. It seems to be helping to flush the

crap from my system and keeping me on a more even keel. It is fantastic not

having to worry about IV access any more.

> My muscle spasm and contractures are getting really bad despite high doses of

Valium, clonazepam and quinine. Any ideas? Help!!

> I am also having this weird symptom where my urinary system is shutting down

completely for 1-2 days each week or so. The scans show no fluid in the kidneys

or bladder. I blow up like a balloon with fluid and discharge a lot from other

places (yuk). Then it just seems to fix itself. This has been happening for two

years, but is becoming much more common. Doctors have no ideas. Has anyone heard

of something like this?

> Sorry for the long post. I look forward to being a more active part of the

group again.

> Hi to all the new members.

> Love,

>Tara Collyer (Brisbane, Australia - Mito, complex 1 deficiency)

>

>This message was sent through MyMail http://www.mymail.com.au

>

>

>

>

>

>Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

> >Hi all,

> > Sorry I haven't been around for a while. Things have been pretty

bad in this neck of the woods.

> > My son Rhys (now 7y.o.) has been diagnosed with autism, severe

> > depressions (he tried to kill himself a couple of times) and OCD.

My son expressed (specific) suicidal thoughts several times when he

was 5 and 6, he seems okay now t.g. I hope you have some good

counseling and a good school system, it makes a big difference. I

think when my son understood that there are a lot of kids like him,

it helped him out. I used to cut myself when I was a teen, but I

don't think it was suicidal per se (although I'll never go on Prozac

because of the risk of suicide). My younger son has a PDD diagnosis,

and he's the sweetest most social kid in the world, so don't feel

bound by diagnoses, take it one day (and one goal) at a time...

> He has also been having a lot of health issues and is facing two

> rounds of surgery in the next couple of months. All thi alone has

> taken it out of us as a family.

> > On top of that, I have been facing a lot of health issues while

trying to stay working (thank God for understanding employers). I had

my port-a-cath implanted in March and it has been great. I have been

having weekly IV therapy at home and when I start to feel crashy. It

seems to be helping to flush the crap from my system and keeping me

on a more even keel. It is fantastic not having to worry about IV

access any more.

> > My muscle spasm and contractures are getting really bad despite

> > high doses of Valium, clonazepam and quinine. Any ideas? Help!!

Do you have one doctor prescribing all the meds? It sounds like you

are on a lot of things...I can't tolerate quinine; NADH sub-lingual

tablets have helped me a lot, I get them from HerbsMD.com (I have a

Complex I defect as well).

Take care,

RH

> > I am also having this weird symptom where my urinary system is

shutting down completely for 1-2 days each week or so. The scans show

no fluid in the kidneys or bladder. I blow up like a balloon with

fluid and discharge a lot from other places (yuk). Then it just seems

to fix itself. This has been happening for two years, but is becoming

much more common. Doctors have no ideas. Has anyone heard of

something like this?

> > Sorry for the long post. I look forward to being a more active

part of the group again.

> > Hi to all the new members.

> > Love,

> >Tara Collyer (Brisbane, Australia - Mito, complex 1 deficiency)

> >

> >This message was sent through MyMail http://www.mymail.com.au

> >

> >

> >

> >

> >

> >Medical advice, information, opinions, data and statements

contained herein are not necessarily those of the list moderators.

The author of this e mail is entirely responsible for its content.

List members are reminded of their responsibility to evaluate the

content of the postings and consult with their physicians regarding

changes in their own treatment.

> >

> >Personal attacks are not permitted on the list and anyone who

sends one is automatically moderated or removed depending on the

severity of the attack.

> >

> >