Re: Questions about tongue atrophy and other things being associated with Mito

[Guest guest]

Only if it is maternally transmitted. There are other forms of

transmission also or it could be from an environmental toxin and not run

in a family at all.

>Oh, one last question for now: if you have Mito, doesn't that mean your mother

and others in her family line also must have had it in some form?

>

>Thanks much,

>

>Randall

>

>

[Guest guest]

Randall

There seems to be a high percentage of people with mito that have

autoimmune disorders and mito specialists are beginning to show some

interest in this. I would think that mito might create the low energy

and ability to fight infections that might make having an autoimmune

disorder more likely - only my thinking. My family has Euler Danlos

Syndrome, but from the other side of the family. It is fairly common

in the general population.

My only experience with high arched palates is that there is often an

association with other genetic abnormalities, but I haven't ever read

that it is connected with mito.

laurie

>

> May have asked this before, but has anyone had (or heard of anyone with

> Mito having) atrophy of tongue (along with some weakness, speech or

> swallowing problems)? Posterior neck weakness (difficulty keeping head up)?

>

> Also, anyone know if Mito is associated with immune abnormalities, like low

> IgA IgG or IGG? I have low IgM but normal IgG and IgA, which supposedly is

> rare. How about any association with antiphospholipid antibody syndrome or

> other autoimmune disorders? Finally, have been told in past by various

> neurologists that I have a very high-arched palate, which sometimes is

> associated with myopathies. Anyone have this or heard of this connection?

> Find it interesting, because this is also associated with some connective

> tissue disorders.

>

> Oh, one last question for now: if you have Mito, doesn't that mean your

> mother and others in her family line also must have had it in some form?

>

> Thanks much,

>

> Randall

>

>

[Guest guest]

HI, Randall

It seems that a lot of mito ppl have autoimmune presentations as well.

I know serveral ppl diagnosed with mito locally who have

antiphospholipid antibody syndrome. I know two locally diagnosed mito

ppl who have Celiac. My Rheumatoid factor is very high, I get large

reactions to bug bits, and worse to hornets, and have sensitivities to

some chemicals and latex. I don't get classical allergy symptoms, but

localized reactions. I am sure the list is very long for others.

Others on this site have spoken about autoimmune, and asked the same

question as you.

As far as the inheritance, my understanding is that the nuclear DNA can

also cause mitochondrial malfunction, and that would depend on genes

from both parents. I think I recall one respected source, and I do

not remember who now, who felt that the vast majority of mito

malfuntion was due to nuclear DNA irregularites. Of course, this is all

such a new area of medicine, it will take time to clarify these

things.

Regards

Sunny

> May have asked this before, but has anyone had (or heard of anyone

> with Mito having) atrophy of tongue (along with some weakness, speech

> or swallowing problems)?  Posterior neck weakness (difficulty keeping

> head up)?

>

> Also, anyone know if Mito is associated with immune abnormalities,

> like low IgA IgG or IGG?  I have low IgM but normal IgG and IgA, which

> supposedly is rare.  How about any association with antiphospholipid

> antibody syndrome or other autoimmune disorders?  Finally, have been

> told in past by various neurologists that I have a very high-arched

> palate, which sometimes is associated with myopathies.  Anyone have

> this or heard of this connection?  Find it interesting, because this

> is also associated with some connective tissue disorders.

>

> Oh, one last question for now:  if you have Mito, doesn't that mean

> your mother and others in her family line also must have had it in

> some form?

>

> Thanks much,

>

> Randall

>

>

[Guest guest]

Sunny,

The possible association between Mito and antiphospholipid antibody syndrome

(APS) is very interesting, since neither is very common, so by chance wouldn't

think many people would have both.

Randall

Re: Questions about tongue atrophy and other things being

associated with Mito

HI, Randall

It seems that a lot of mito ppl have autoimmune presentations as well.

I know serveral ppl diagnosed with mito locally who have

antiphospholipid antibody syndrome. I know two locally diagnosed mito

ppl who have Celiac. My Rheumatoid factor is very high, I get large

reactions to bug bits, and worse to hornets, and have sensitivities to

some chemicals and latex. I don't get classical allergy symptoms, but

localized reactions. I am sure the list is very long for others.

Others on this site have spoken about autoimmune, and asked the same

question as you.

As far as the inheritance, my understanding is that the nuclear DNA can

also cause mitochondrial malfunction, and that would depend on genes

from both parents. I think I recall one respected source, and I do

not remember who now, who felt that the vast majority of mito

malfuntion was due to nuclear DNA irregularites. Of course, this is all

such a new area of medicine, it will take time to clarify these

things.

Regards

Sunny

> May have asked this before, but has anyone had (or heard of anyone

> with Mito having) atrophy of tongue (along with some weakness, speech

> or swallowing problems)? Posterior neck weakness (difficulty keeping

> head up)?

>

> Also, anyone know if Mito is associated with immune abnormalities,

> like low IgA IgG or IGG? I have low IgM but normal IgG and IgA, which

> supposedly is rare. How about any association with antiphospholipid

> antibody syndrome or other autoimmune disorders? Finally, have been

> told in past by various neurologists that I have a very high-arched

> palate, which sometimes is associated with myopathies. Anyone have

> this or heard of this connection? Find it interesting, because this

> is also associated with some connective tissue disorders.

>

> Oh, one last question for now: if you have Mito, doesn't that mean

> your mother and others in her family line also must have had it in

> some form?

>

> Thanks much,

>

> Randall

>

>

[Guest guest]

Laurie,

Interesting about Ehler Danlos Syndrome. Was diagnosed with M.A.S.S. syndrom

(Mitral Valve, Aorta, Skin and Skeleton - a mild variant on the spectrum of

connective tissue disorders that ranges from simple mitral valve prolapse

syndrome to Marfan's syndrome. Other geneticists have disputed this, saying I

don't have enough signs to qualify. But these are all connective tissue

disorders and high arched palates are found in mitral valve prolapse (one of the

reasons Cardiologists suspected I had it even though it didn't show on first

echocardiogram), Marfans and some of these other connective tissue conditions,

as well as being associated with (some?) Myopathies.

Randall

Re: Questions about tongue atrophy and other things being

associated with Mito

Randall

There seems to be a high percentage of people with mito that have

autoimmune disorders and mito specialists are beginning to show some

interest in this. I would think that mito might create the low energy

and ability to fight infections that might make having an autoimmune

disorder more likely - only my thinking. My family has Euler Danlos

Syndrome, but from the other side of the family. It is fairly common

in the general population.

My only experience with high arched palates is that there is often an

association with other genetic abnormalities, but I haven't ever read

that it is connected with mito.

laurie

>

> May have asked this before, but has anyone had (or heard of anyone with

> Mito having) atrophy of tongue (along with some weakness, speech or

> swallowing problems)? Posterior neck weakness (difficulty keeping head up)?

>

> Also, anyone know if Mito is associated with immune abnormalities, like low

> IgA IgG or IGG? I have low IgM but normal IgG and IgA, which supposedly is

> rare. How about any association with antiphospholipid antibody syndrome or

> other autoimmune disorders? Finally, have been told in past by various

> neurologists that I have a very high-arched palate, which sometimes is

> associated with myopathies. Anyone have this or heard of this connection?

> Find it interesting, because this is also associated with some connective

> tissue disorders.

>

> Oh, one last question for now: if you have Mito, doesn't that mean your

> mother and others in her family line also must have had it in some form?

>

> Thanks much,

>

> Randall

>

>

[Guest guest]

Hi, Randall

I believe much goes undiagnosed, and the real incidence of both mito

and APS is probably much higher. As to the relationship, there

probably is one, yet to be delineated. A very good friend was

diagnosed with Celiac (and she has other autoimmune issues, but not

mito) after suffering years of baffling symptoms ( but not the

" classical " ones) that were ultimately due to Celiac. She shares with

me some of the latest research on Celiac. I believe the estimated

incidence is 1 out of 160ish ppl, yet far fewer are diagnosed.

Non-textbook presentations are quite common, and, like mito, diagnosis

can be quite tricky. I am sure the underdiagnosis is true for mito as

well as APS. As far as the co-existence of many diseases, I don't

think that is random most of the time. Although medicine knows so

much, there is still a long way to go. Do you have APS? If so, what

treatment is suggested for you? My acquaintances just use aspirin, I

believe. Take care.

Sunny

> Sunny,

>

> The possible association between Mito and antiphospholipid antibody

> syndrome (APS) is very interesting, since neither is very common, so

> by chance wouldn't think many people would have both.

>

> Randall

>   Re: Questions about tongue atrophy and other

> things being associated with Mito

>

>

>   HI, Randall

>     It seems that a lot of mito ppl have autoimmune presentations as

> well.

>     I know serveral  ppl diagnosed with mito locally who have

>   antiphospholipid antibody syndrome.  I know two locally diagnosed

> mito

>   ppl  who have Celiac.  My Rheumatoid factor is very high, I get

> large

>   reactions to bug bits, and worse to hornets, and have sensitivities

> to

>   some chemicals and latex. I don't get classical allergy symptoms,

> but

>   localized reactions.  I am sure the list is very long for others.

>

>   Others on this site have spoken about autoimmune, and asked the same

>   question as you.

>

>   As far as the inheritance, my understanding is that the nuclear DNA

> can

>   also cause mitochondrial malfunction, and that would depend on genes

>   from both parents.  I think I recall  one respected source, and I do

>   not remember who now, who felt that the vast majority of mito

>   malfuntion was due to nuclear DNA irregularites. Of course, this is

> all

>   such a new area of medicine, it will take  time to clarify these

>   things.

>

>   Regards

>

>   Sunny

>    

>

>   >  May have asked this before, but has anyone had (or heard of

> anyone

>   > with Mito having) atrophy of tongue (along with some weakness,

> speech

>   > or swallowing problems)?  Posterior neck weakness (difficulty

> keeping

>   > head up)?

>   >

>   >  Also, anyone know if Mito is associated with immune

> abnormalities,

>   > like low IgA IgG or IGG?  I have low IgM but normal IgG and IgA,

> which

>   > supposedly is rare.  How about any association with

> antiphospholipid

>   > antibody syndrome or other autoimmune disorders?  Finally, have

> been

>   > told in past by various neurologists that I have a very

> high-arched

>   > palate, which sometimes is associated with myopathies.  Anyone

> have

>   > this or heard of this connection?  Find it interesting, because

> this

>   > is also associated with some connective tissue disorders.

>   >

>   >  Oh, one last question for now:  if you have Mito, doesn't that

> mean

>   > your mother and others in her family line also must have had it in

>   > some form?

>   >

>   >  Thanks much,

>   >

>   >  Randall

>   >

>   > 

[Guest guest]

Randall

My family doesn't have a formal diagnosis of Ehler Danlos from a

specialist, but other docs have said my son has it for sure. He can

stretch his skin several inches and can dislocate his joints at will

(and when not planned). My father had and brother has aortic

anyersims. The rest of us just have sloppy joints and scar and bruise

easily. My father and I were both diagnosed with exceptionally large

arteries by heart cath. My sibs and I all have mital valve

reguritation and GERD. Hernias are also common in the family. My

brother was seen by a Marfan specialist who said he didn't have

Marfan's but some connective tissue disorder.

laurie

>

> Laurie,

>

> Interesting about Ehler Danlos Syndrome. Was diagnosed with M.A.S.S.

> syndrom (Mitral Valve, Aorta, Skin and Skeleton - a mild variant on the

> spectrum of connective tissue disorders that ranges from simple mitral valve

> prolapse syndrome to Marfan's syndrome. Other geneticists have disputed

> this, saying I don't have enough signs to qualify. But these are all

> connective tissue disorders and high arched palates are found in mitral

> valve prolapse (one of the reasons Cardiologists suspected I had it even

> though it didn't show on first echocardiogram), Marfans and some of these

> other connective tissue conditions, as well as being associated with (some?)

> Myopathies.

>

> Randall

>

> Re: Questions about tongue atrophy and other things

> being associated with Mito

>

>

> Randall

>

> There seems to be a high percentage of people with mito that have

> autoimmune disorders and mito specialists are beginning to show some

> interest in this. I would think that mito might create the low energy

> and ability to fight infections that might make having an autoimmune

> disorder more likely - only my thinking. My family has Euler Danlos

> Syndrome, but from the other side of the family. It is fairly common

> in the general population.

>

> My only experience with high arched palates is that there is often an

> association with other genetic abnormalities, but I haven't ever read

> that it is connected with mito.

>

> laurie

>

>

> >

> > May have asked this before, but has anyone had (or heard of anyone

> with

> > Mito having) atrophy of tongue (along with some weakness, speech or

> > swallowing problems)? Posterior neck weakness (difficulty keeping head

> up)?

> >

> > Also, anyone know if Mito is associated with immune abnormalities,

> like low

> > IgA IgG or IGG? I have low IgM but normal IgG and IgA, which

> supposedly is

> > rare. How about any association with antiphospholipid antibody

> syndrome or

> > other autoimmune disorders? Finally, have been told in past by various

> > neurologists that I have a very high-arched palate, which sometimes is

> > associated with myopathies. Anyone have this or heard of this

> connection?

> > Find it interesting, because this is also associated with some

> connective

> > tissue disorders.

> >

> > Oh, one last question for now: if you have Mito, doesn't that mean

> your

> > mother and others in her family line also must have had it in some

> form?

> >

> > Thanks much,

> >

> > Randall

> >

> >

[Guest guest]

I second that point about environmental toxins. Some suggestive interlocking

evidence:

1) MSL (which I have) is EXTREMELY rare (200 known cases). About half of MSL is

associated with alcoholism (not in me), but obviously, not all alcoholics get

MSL.

2) About 20% of MSLs have MERRF (as do I), a mitochondrial mutation. If the

MERRF is found in blood for instance, which only has nuclear DNA, then my

understanding is that it must have be maternally inherited, or at least,

inherited. But MERRF, while rare, is nowhere near as rare as MSL, i.e. not all

MERRFs get MSL.

3) MSL appear to be a lipid storage disorder (the L stand for lipomatosis, many

and/or large UNencapsulated lipomas). MSL is commonly associated with fatty

liver (hepatic steatosis). It is almost always associated with many classic mito

symptoms, even when MERRF isn't present.

4) Certain HIV meds (like AZT) cause " buffalo hump " which looks a LOT like MSL,

and is associated with mito damage and classic mito symptoms. There are some

other " toxins " (esp. certain pesticides) that have some linkage to MSL or

" hump " .

5) MSL has some geographic hotspots, esp. eastern Mediterranean e.g. Greece.

Possible lurking genetics, at 12q14.3 see

http://www.ncbi.nlm.nih.gov/Omim/getmap.cgi?l151900 .

Some mito/neuro docs have agreed with me, very generally speaking, that most MSL

may be due to an inherited mito defect triggered by some environmental exposure.

But it's a little hard to do much statistical research on such a small sample.

Steve

Re: Questions about tongue atrophy and other things being

associated with Mito

Only if it is maternally transmitted. There are other forms of

transmission also or it could be from an environmental toxin and not run

in a family at all.

>Oh, one last question for now: if you have Mito, doesn't that mean your

mother and others in her family line also must have had it in some form?

>

>Thanks much,

>

>Randall

[Guest guest]

Steve

On your point 2, it is mt DNA that is maturnally inherited. If it is a

nDNA defect then it can be any number of transmission modes, the same

as in any nDNA defect. Lipomas seem to be more often seen in mito than

the general population even if not MSL. At least this is my

understanding.

laurie

>

> I second that point about environmental toxins. Some suggestive

> interlocking evidence:

>

> 1) MSL (which I have) is EXTREMELY rare (200 known cases). About half of

> MSL is associated with alcoholism (not in me), but obviously, not all

> alcoholics get MSL.

>

> 2) About 20% of MSLs have MERRF (as do I), a mitochondrial mutation. If the

> MERRF is found in blood for instance, which only has nuclear DNA, then my

> understanding is that it must have be maternally inherited, or at least,

> inherited. But MERRF, while rare, is nowhere near as rare as MSL, i.e. not

> all MERRFs get MSL.

>

> 3) MSL appear to be a lipid storage disorder (the L stand for lipomatosis,

> many and/or large UNencapsulated lipomas). MSL is commonly associated with

> fatty liver (hepatic steatosis). It is almost always associated with many

> classic mito symptoms, even when MERRF isn't present.

>

> 4) Certain HIV meds (like AZT) cause " buffalo hump " which looks a LOT like

> MSL, and is associated with mito damage and classic mito symptoms. There are

> some other " toxins " (esp. certain pesticides) that have some linkage to MSL

> or " hump " .

>

> 5) MSL has some geographic hotspots, esp. eastern Mediterranean e.g.

> Greece. Possible lurking genetics, at 12q14.3 see

> http://www.ncbi.nlm.nih.gov/Omim/getmap.cgi?l151900 .

>

> Some mito/neuro docs have agreed with me, very generally speaking, that

> most MSL may be due to an inherited mito defect triggered by some

> environmental exposure. But it's a little hard to do much statistical

> research on such a small sample.

>

> Steve

> Re: Questions about tongue atrophy and other things

> being associated with Mito

>

>

> Only if it is maternally transmitted. There are other forms of

> transmission also or it could be from an environmental toxin and not run

> in a family at all.

>

>

>

> >Oh, one last question for now: if you have Mito, doesn't that mean your

> mother and others in her family line also must have had it in some form?

> >

> >Thanks much,

> >

> >Randall

>

>

>