Re: Re: Can Chronic Fatigue syndrome be Mito related?

[Guest guest]

>> (mito is maternally inherited).

Not necessarily. It can be an autosomal recessive inheritance. That's how

the docs think my kids got it.

Sue & Jack, worn out parents to the greatests kids on earth, Las Vegas, NV--

(14) & Billy (13)--both with Leigh's Disease (?), MR (mild), g-tube.

Billy--fundo, trach (larynotracheomalacia), vent 24/7, spinal fusion,

baclofen pump. Chris-no left hip socket! Visit us!

http://members.cox.net/jscb

[Guest guest]

>> (mito is maternally inherited).

Not necessarily. It can be an autosomal recessive inheritance. That's how

the docs think my kids got it.

Sue & Jack, worn out parents to the greatests kids on earth, Las Vegas, NV--

(14) & Billy (13)--both with Leigh's Disease (?), MR (mild), g-tube.

Billy--fundo, trach (larynotracheomalacia), vent 24/7, spinal fusion,

baclofen pump. Chris-no left hip socket! Visit us!

http://members.cox.net/jscb

[Guest guest]

I have to agree that this issue is very Mito related. Zipporrah has tons of fatigue and I spoke to Dr. Whiteman just yesterday and he said due to that issue along with a few others, he feels Zipporrah is probably more affected metabolically than Asenath. My response was that I had been thinking the same for quite a while now, but just hadn't had the chance to talk with him about all the issues she is dealing with. ANYWAY, fatigue is a very common issue with Mito. When I have my crashes, I am so fatigued I cannot walk, stir a batch of muffins, hold a phone, etc. It feels as though there are weights tied to your arms and legs and even your neck at times. Excessive need for sleep is also very common. Zipporrah would sleep from 10 PM to 3-4 PM the next day at times, my oldest son sleeps tons when he can, and again during my spells, I need lots of sleep to recuperate. (Thankfully, the last episode/crash I have had that was real bad was over two years ago!) I would ask for further metabolic testing for your son to see if Mito might be the correct diagnosis, especially if Mito is in the family. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms)

>

>Reply-To: Mito

>To: Mito

>Subject: Re: Can Chronic Fatigue syndrome be Mito related?

>Date: Wed, 05 Jan 2005 03:26:04 -0000

>

>

>

>There is a school of thought that says that Chronic Fatigue and Fibromyalgia

>are misdiagnosed when the problem is really mito. Think of the "healthy"

>moms who have mito kids. The moms must have mito if the kids have mito

>(mito is maternally inherited).

>

>Check out the symptoms of Chronic Fatigue and Fibromyalgia. Don't they go

>along with many of the symptoms of mito?

>http://www.cdc.gov/ncidod/diseases/cfs/

>http://www.fmnetnews.com/pages/criteria.html

>

>

>

>

>

>

>

>Please contact mito-owner with any problems or questions.

>

[Guest guest]

reason i think theres a link is because fms affects ur energy and mitochondria are energy cells that are affected. they say that fms is more depression related and auto immune yet there are a lot of symptoms similar to mito and or lupus, yet it mocks so many diff things.

Darla Klein wrote:

I have to agree that this issue is very Mito related. Zipporrah has tons of fatigue and I spoke to Dr. Whiteman just yesterday and he said due to that issue along with a few others, he feels Zipporrah is probably more affected metabolically than Asenath. My response was that I had been thinking the same for quite a while now, but just hadn't had the chance to talk with him about all the issues she is dealing with. ANYWAY, fatigue is a very common issue with Mito. When I have my crashes, I am so fatigued I cannot walk, stir a batch of muffins, hold a phone, etc. It feels as though there are weights tied to your arms and legs and even your neck at times. Excessive need for sleep is also very common. Zipporrah would sleep from 10 PM to 3-4 PM the next day at times, my oldest son sleeps tons when he can, and again during my spells, I need lots of sleep to recuperate. (Thankfully, the

last episode/crash I have had that was real bad was over two years ago!) I would ask for further metabolic testing for your son to see if Mito might be the correct diagnosis, especially if Mito is in the family. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms)

> >Reply-To: Mito >To: Mito >Subject: Re: Can Chronic Fatigue syndrome be Mito related? >Date: Wed, 05 Jan 2005 03:26:04 -0000 > > > >There is a school of thought that says that Chronic Fatigue and Fibromyalgia >are misdiagnosed when the problem is really mito. Think of the "healthy" >moms who have mito kids. The moms must have mito if the kids have mito >(mito is maternally inherited). > >Check out the symptoms of Chronic Fatigue and Fibromyalgia. Don't they go >along with many of the symptoms of mito? >http://www.cdc.gov/ncidod/diseases/cfs/ >http://www.fmnetnews.com/pages/criteria.html > > > > > > > >Please contact mito-owner with any problems or questions. >