Re: Is Lupus related to Mito in any way?

[Guest guest]

Tamara,

I have heard of them running hand in hand, but as far as I know they are not

related, it might be a good idea to have him checked for celiac disease. ( I

was just diagnosed within the last 3 months, and I know Lupus is another

autoimmune disease that can be related to celiac. Just a thought, I pray

that all will be well, and that you will not have another disease to deal

with!!

Wayne, , Gentry and ~Angel Aspyn~

www.aspynblock.com

Is Lupus related to Mito in any way?

>

>

> My son Dakota(Joey's brother) age 10, has had a reacurring pateceia

> rash. He had it back in Sept, and they never figured out why.

> They ruled out Cancer and internal bleeding and left it at that. I

> came back in full force last week.

> They ran new blood work Friday. WBC was low 3.4, RBC was low, band

> was high 16, Lymphocyte was low at 26 and his ESR was high at 26,

> which shows inflamation. They are now trying to rule out a

> connective tissue disease. Such as Arthritis ot Lupus. He has had

> alot of joint pain in the last year, yet no swelling. The new blood

> work will be back next, you know Christmas week. That is always how

> it works around here. We would rather it be nothing, yet we need

> some answers. Does any of this sound formiliar to anyone. Can Mito

> and a Connective Tissue disease be related? I am very scared! I

> would hate to be dealing with two totally different cronic

> diseases. ANY HELP WOULD BE GREAT!!!!!!

> Tamara

>

>

>

>

>

>

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

>

[Guest guest]

Tamara,

I have heard of them running hand in hand, but as far as I know they are not

related, it might be a good idea to have him checked for celiac disease. ( I

was just diagnosed within the last 3 months, and I know Lupus is another

autoimmune disease that can be related to celiac. Just a thought, I pray

that all will be well, and that you will not have another disease to deal

with!!

Wayne, , Gentry and ~Angel Aspyn~

www.aspynblock.com

Is Lupus related to Mito in any way?

>

>

> My son Dakota(Joey's brother) age 10, has had a reacurring pateceia

> rash. He had it back in Sept, and they never figured out why.

> They ruled out Cancer and internal bleeding and left it at that. I

> came back in full force last week.

> They ran new blood work Friday. WBC was low 3.4, RBC was low, band

> was high 16, Lymphocyte was low at 26 and his ESR was high at 26,

> which shows inflamation. They are now trying to rule out a

> connective tissue disease. Such as Arthritis ot Lupus. He has had

> alot of joint pain in the last year, yet no swelling. The new blood

> work will be back next, you know Christmas week. That is always how

> it works around here. We would rather it be nothing, yet we need

> some answers. Does any of this sound formiliar to anyone. Can Mito

> and a Connective Tissue disease be related? I am very scared! I

> would hate to be dealing with two totally different cronic

> diseases. ANY HELP WOULD BE GREAT!!!!!!

> Tamara

>

>

>

>

>

>

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

>

[Guest guest]

I don't have any helpful advice but wanted to let you know we will be

praying for your son and you. I am sure it must be stressful to wonder if

two separate diseases are happening in one family. I know what that feels

like because Asenath has two diseases herself. Her CNS Vasculitis is almost

unheard of in a child. Mayo said they have only seen it on autopsy in

children. They can't figure out why she has it because only a handful in

the world have dealt with it (in the brain in children). Amazingly, there

are at least two of us Mito families in this group that are dealing with CNS

Vasculitis in the brain, and another Mito family that is dealing with it in

other parts of the body. We feel there must be some connection between Mito

and the Vasculitis, but it is definitely a confusing issue for the docs to

figure out. Having one rare, deadly disease is hard enough, but then to

find out you have two deadly diseases can really be shocking. I hope the

docs will be able to figure out what is going on in Dakota and that it is

something they are able to treat. Please keep us updated and let me know if

you need a friend to talk to on the phone. You can e-mail me your phone

number if you want to talk to honeybear50317@...

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)

Is Lupus related to Mito in any way?

>

>

> My son Dakota(Joey's brother) age 10, has had a reacurring pateceia

> rash. He had it back in Sept, and they never figured out why.

> They ruled out Cancer and internal bleeding and left it at that. I

> came back in full force last week.

> They ran new blood work Friday. WBC was low 3.4, RBC was low, band

> was high 16, Lymphocyte was low at 26 and his ESR was high at 26,

> which shows inflamation. They are now trying to rule out a

> connective tissue disease. Such as Arthritis ot Lupus. He has had

> alot of joint pain in the last year, yet no swelling. The new blood

> work will be back next, you know Christmas week. That is always how

> it works around here. We would rather it be nothing, yet we need

> some answers. Does any of this sound formiliar to anyone. Can Mito

> and a Connective Tissue disease be related? I am very scared! I

> would hate to be dealing with two totally different cronic

> diseases. ANY HELP WOULD BE GREAT!!!!!!

> Tamara

>

>

>

>

>

>

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

>

[Guest guest]

I don't have any helpful advice but wanted to let you know we will be

praying for your son and you. I am sure it must be stressful to wonder if

two separate diseases are happening in one family. I know what that feels

like because Asenath has two diseases herself. Her CNS Vasculitis is almost

unheard of in a child. Mayo said they have only seen it on autopsy in

children. They can't figure out why she has it because only a handful in

the world have dealt with it (in the brain in children). Amazingly, there

are at least two of us Mito families in this group that are dealing with CNS

Vasculitis in the brain, and another Mito family that is dealing with it in

other parts of the body. We feel there must be some connection between Mito

and the Vasculitis, but it is definitely a confusing issue for the docs to

figure out. Having one rare, deadly disease is hard enough, but then to

find out you have two deadly diseases can really be shocking. I hope the

docs will be able to figure out what is going on in Dakota and that it is

something they are able to treat. Please keep us updated and let me know if

you need a friend to talk to on the phone. You can e-mail me your phone

number if you want to talk to honeybear50317@...

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)

Is Lupus related to Mito in any way?

>

>

> My son Dakota(Joey's brother) age 10, has had a reacurring pateceia

> rash. He had it back in Sept, and they never figured out why.

> They ruled out Cancer and internal bleeding and left it at that. I

> came back in full force last week.

> They ran new blood work Friday. WBC was low 3.4, RBC was low, band

> was high 16, Lymphocyte was low at 26 and his ESR was high at 26,

> which shows inflamation. They are now trying to rule out a

> connective tissue disease. Such as Arthritis ot Lupus. He has had

> alot of joint pain in the last year, yet no swelling. The new blood

> work will be back next, you know Christmas week. That is always how

> it works around here. We would rather it be nothing, yet we need

> some answers. Does any of this sound formiliar to anyone. Can Mito

> and a Connective Tissue disease be related? I am very scared! I

> would hate to be dealing with two totally different cronic

> diseases. ANY HELP WOULD BE GREAT!!!!!!

> Tamara

>

>

>

>

>

>

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

>

[Guest guest]

I'm not sure if it is related or not, but I show "soft" signs of mito and have been tested for Lupus at least three different times in my life. I was always a sick child and had alot of unexplained illnesses (even having the doctors convinced I had Lukemia once, wow they were wrong!) As a teen I was sent to an immunologist who told me that the blood test would only confirm Lupus, yup he was wrong too. So I'm not sure if it is related or not, but it sounds suspicious.

Best wishes

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[Guest guest]

I have been tested for Lupus multiple times as well since I have had very

similar symptoms. It is always one of the first conditions the docs think

of after talking with me. I think some of those autoimmune conditions can

line up with Mito pretty easily. Not sure how it all works, just know the

symptoms are often intertwined.

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)

Re: Is Lupus related to Mito in any way? ()

>

> Wow, thanks for adding the RA info into your reply. I did not ask the

> original question, but I have been thinking about having my doctor test me

> for this. It really makes me think. I was first diagnosed with arthritis

> when I was nine years old (yup, only 9). Since I have been diagnosed I

> have had the arthritis shaved off my knee three times, and have had alot

> of surgery on my knee.

>

> I have soft signs of mito, but not interested in pursuing a diagnosis of

> mito. Maybe now I am more convinced to have the RA test done, though.

>

> Thanks

>

>

>

>

>

>

>

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