Re: Let's See How Many Answers We Get To This

[Guest guest]

Yes...Chronic Fatigue Syndrome, and Lymes Disease.

[Guest guest]

Hi Alice,

I started out with Epstein Barre which I guess I really did have at some point, then Bell's Palsy, then MS, then Myasthenia Gravis, then Chronic Fatigue and finally mito. Now they think I have an autoimmune disease but aren't sure which one. I also have arthritis, Reynaud's Syndrome and endometriosis. Of course the most common diagnosis I got throughout my whole illness was hypochondria or mental disease because most doctors didn't believe me. I would like to do another survey on symptoms and weird characteristics like we did a while ago. We should do one before the conference and collect the data to show to the specialists.

[Guest guest]

As you know Alice, my Rheumotologist has told me, I must have RA because there is no way I could have Mito, I am too old. HA! I am 54!

Kathy B

[Guest guest]

Count me being in as previous diagnosis of fibromyalgia

Maggie

> How many of you have been told by various physicians in your

search for answers regarding your medical problems that you have

symptoms of or a diagnosis of:

>

> 1. Lupus

>

> 2. MS

>

> 3. A Connective Tissue Disorder

>

> 4. Lyme

>

> 5. An Auto Immune Disorder

>

> 6. Chronic Fatigue

>

> 7. Fibromyalgia

>

> If anyone can add to this list - please be sure to do so. This

list is sent out to everyone so whether you have a Mito diagnosis or

just trying to find out - please reply.

>

> Alice

[Guest guest]

Autoimmune, fibromyalgia, psoriatic arthritis (even though I have never

had psoriasis).....

[Guest guest]

For me, it was, Lyme, Chronic Fatigue, Fibromyalgia and an auto immune disorder (probable of inner ear). (This came after the diagnosis).

a

How many of you have been told by various physicians in your search for answers regarding your medical problems that you have symptoms of or a diagnosis of:

1. Lupus

2. MS

3. A Connective Tissue Disorder

4. Lyme

5. An Auto Immune Disorder

6. Chronic Fatigue

7. Fibromyalgia

If anyone can add to this list - please be sure to do so. This list is sent out to everyone so whether you have a Mito diagnosis or just trying to find out - please reply.

Alice

[Guest guest]

Yes to everything except Lyme..add Myasthenia Gravis...one doctor looked at Susac and Cadasil...anything that has a connection of deafness and loss of vision! We KNOW I have immune problems even if it is from being on prednisone since 1997.

Debra

Let's See How Many Answers We Get To This

How many of you have been told by various physicians in your search for answers regarding your medical problems that you have symptoms of or a diagnosis of:

1. Lupus

2. MS

3. A Connective Tissue Disorder

4. Lyme

5. An Auto Immune Disorder

6. Chronic Fatigue

7. Fibromyalgia

If anyone can add to this list - please be sure to do so. This list is sent out to everyone so whether you have a Mito diagnosis or just trying to find out - please reply.

AliceMedical 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]

Do you people with mito also use a C-PAP...Alice may end up making my

diagnosis before the doctors...either that or I am catching your symptoms

through the computer

Debra

Re: Let's See How Many Answers We Get To This

> Count me being in as previous diagnosis of fibromyalgia

>

> Maggie

>

>

> > How many of you have been told by various physicians in your

> search for answers regarding your medical problems that you have

> symptoms of or a diagnosis of:

> >

> > 1. Lupus

> >

> > 2. MS

> >

> > 3. A Connective Tissue Disorder

> >

> > 4. Lyme

> >

> > 5. An Auto Immune Disorder

> >

> > 6. Chronic Fatigue

> >

> > 7. Fibromyalgia

> >

> > If anyone can add to this list - please be sure to do so. This

> list is sent out to everyone so whether you have a Mito diagnosis or

> just trying to find out - please reply.

> >

> > Alice

>

>

>

> 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]

Debra,

Many people with mito use bi-paps or C-paps, but not all do. I use a bi-pap machine at night and sometimes end up using it during the day for an hour or two if I am extremely fatigued.

Smiles,

a

Do you people with mito also use a C-PAP...Alice may end up making mydiagnosis before the doctors...either that or I am catching your symptomsthrough the computerDebra

[Guest guest]

---Yes to MS, autoimmune, chronic fatique syndrome and fibromyalgia

In , " Alice " <justagram@c...> wrote:

> How many of you have been told by various physicians in your

search for answers regarding your medical problems that you have

symptoms of or a diagnosis of:

>

> 1. Lupus

>

> 2. MS

>

> 3. A Connective Tissue Disorder

>

> 4. Lyme

>

> 5. An Auto Immune Disorder

>

> 6. Chronic Fatigue

>

> 7. Fibromyalgia

>

> If anyone can add to this list - please be sure to do so. This

list is sent out to everyone so whether you have a Mito diagnosis or

just trying to find out - please reply.

>

> Alice

[Guest guest]

> How many of you have been told by various physicians in your search for

answers regarding your medical problems that you have symptoms of or a

diagnosis of:

>

> 1. Lupus

>

> 2. MS

>

> 3. A Connective Tissue Disorder

>

> 4. Lyme

>

> 5. An Auto Immune Disorder

>

> 6. Chronic Fatigue

>

> 7. Fibromyalgia

>

> If anyone can add to this list - please be sure to do so. This list is

sent out to everyone so whether you have a Mito diagnosis or just trying to

find out - please reply.

>

> Alice

I'm fibromyalgia.

My addition would be the ever-popular " you're just stressed out " which

translates to the unspoken " it's all in your head " . I was offered more than

once to see a mental health counselor. And I went. Of course it solved

nothing, but at least they listened :-)

B

[Guest guest]

Whoops! That's one I forgot.

8. Myasthenia Gravis

Debra - Welcome to the group. I think you have found a home.

Alice

> Yes to everything except Lyme..add Myasthenia Gravis...one doctor

looked at Susac and Cadasil...anything that has a connection of

deafness and loss of vision! We KNOW I have immune problems even if

it is from being on prednisone since 1997.

>

> Debra

> Let's See How Many Answers We Get To This

>

>

> How many of you have been told by various physicians in your

search for answers regarding your medical problems that you have

symptoms of or a diagnosis of:

>

> 1. Lupus

>

> 2. MS

>

> 3. A Connective Tissue Disorder

>

> 4. Lyme

>

> 5. An Auto Immune Disorder

>

> 6. Chronic Fatigue

>

> 7. Fibromyalgia

>

> If anyone can add to this list - please be sure to do so. This

list is sent out to everyone so whether you have a Mito diagnosis or

just trying to find out - please reply.

>

> Alice

>

>

[Guest guest]

Lupus for me

[Guest guest]

Hi Alice,

All of those plus osteopenia, osteoarthritis and an " ill-defined

inflammatory condition " too. Seeing your list reminds me of how

frustrating and expensive it was to run through all those tests.

Kathy G.

On Tuesday, December 2, 2003, at 03:17 PM, Alice wrote:

> How many of you have been told by various physicians in your search

> for answers regarding your medical problems that you have symptoms of

> or a diagnosis of:

>  

> 1.  Lupus

>  

> 2.  MS

>  

> 3.  A Connective Tissue Disorder

>  

> 4.  Lyme

>  

> 5.  An Auto Immune Disorder

>  

> 6.  Chronic Fatigue

>  

> 7.  Fibromyalgia

>  

> If anyone can add to this list - please be sure to do so.  This list

> is sent out to everyone so whether you have a Mito diagnosis or just

> trying to find out - please reply.

>  

> Alice

>

[Guest guest]

For Walter, it was:

essential tremors (by a pediatric neurologist)

being watched too much by his neurotic mother..that would be me (good

thing that neuro isn't practicing medicine anymore...he went into

research)

juvenile myoclonic epilepsy (by s Hopkins doctor)

Leber's Optic Neuropothy (by a different Hopkins physician who at

least was headed in the right direction)

Finally a diagnosis of MERFF about 2 weeks ago. It's been along 5

years getting to this point.

Kim

> How many of you have been told by various physicians in your search

for answers regarding your medical problems that you have symptoms of

or a diagnosis of:

>

> 1. Lupus

>

> 2. MS

>

> 3. A Connective Tissue Disorder

>

> 4. Lyme

>

> 5. An Auto Immune Disorder

>

> 6. Chronic Fatigue

>

> 7. Fibromyalgia

>

> If anyone can add to this list - please be sure to do so. This

list is sent out to everyone so whether you have a Mito diagnosis or

just trying to find out - please reply.

>

> Alice

[Guest guest]

-Dear Alice, i have been considered for the following diagnoses- in

chronilogical order: lupus, scleroderma, polymiositis,

mitochondrial disorder/chronic fatigue syndrome, Celia (that is , apart from the

nasty question of " functional disorder)

-- In , " Alice " <justagram@c...> wrote:

> How many of you have been told by various physicians in your search for

answers regarding your medical problems that you have

symptoms of or a diagnosis of:

>

> 1. Lupus

>

> 2. MS

>

> 3. A Connective Tissue Disorder

>

> 4. Lyme

>

> 5. An Auto Immune Disorder

>

> 6. Chronic Fatigue

>

> 7. Fibromyalgia

>

> If anyone can add to this list - please be sure to do so. This list is sent

out to everyone so whether you have a Mito diagnosis or

just trying to find out - please reply.

>

> Alice

[Guest guest]

Not me.

Debra Beckmann wrote:

Do you people with mito also use a C-PAP...Alice may end up making my

diagnosis before the doctors...either that or I am catching your symptoms

through the computer

Debra

Re: Let's See How Many Answers We Get To This

Count me being in as previous diagnosis of fibromyalgia

Maggie

How many of you have been told by various physicians in your

search for answers regarding your medical problems that you have

symptoms of or a diagnosis of:

1. Lupus

2. MS

3. A Connective Tissue Disorder

4. Lyme

5. An Auto Immune Disorder

6. Chronic Fatigue

7. Fibromyalgia

If anyone can add to this list - please be sure to do so. This

list is sent out to everyone so whether you have a Mito diagnosis or

just trying to find out - please reply.

Alice

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]

Same for me.

Tara

Re: Let's See How Many Answers We Get To This

---Yes to MS, autoimmune, chronic fatique syndrome and fibromyalgiaIn , "Alice " <justagram@c...> wrote:> How many of you have been told by various physicians in your search for answers regarding your medical problems that you have symptoms of or a diagnosis of:> > 1. Lupus> > 2. MS> > 3. A Connective Tissue Disorder> > 4. Lyme> > 5. An Auto Immune Disorder> > 6. Chronic Fatigue> > 7. Fibromyalgia> > If anyone can add to this list - please be sure to do so. This list is sent out to everyone so whether you have a Mito diagnosis or just trying to find out - please reply.> > Alice

[Guest guest]

1. Arthritis - It didn't feel like arthritis at the time. I was only 34. It wasn't arthritis then, now I'm 51 and I have:

2. Osteoarthritis

3. Cysts - "It's not a tu-ma!"

4. "It's all in my head disease" - Yes, it's in my head and the rest of my body. Cells are everywhere!

5. "How many children do you have? Disease" - Warning: the surgeon general has determined that children cause disease.

6. "How old are you?Disease" - Another phrase for: You are a woman...women begin getting crazy when they reach 40.

7. Stress - the only stress I have are the doctors!

8. Depression - One has a tendency to become depressed when doctors say, "It's all in your head...you are stressed...you are depressed."

9. Stiff man - Hey, doc...um...I'm a WOman!

10. Isaac's Syndrome - Well, we named our daughter, . Could that be it?

11. Dystonia - Nope, wrong!

12. Propriospinal myoclonus - Wrong, again!

13. Spasms of unknown etiology - Right!!! "Unknown", that's it!!!

14. Spasms of my diaphragm - Oh, so that's why I can't breathe...duh.

15. Esophageal spasms - I thought there was a reason that I couldn't swallow, either! Choking optional.

16. Obesity - Am I really "that" fat?

17. Short stature - "Short" is a "relative" term.

18. Photophobia - I always hated to have my picture taken!

19. Ptosis - Just call me "Droopy".

20. Error in zinc transport - You got me on that one. Liver tissue zinc count -0.

21. Pancreatic Enzyme Insufficiency - I don't make the enzymes to digest my food, causing:

22. Chronic diarrhea - fun!

23. Exercise intolerance - Who wants to work out anyway?

24. Cramps - see, I don't need to exercise; my muscles do it on their own!

25. Dementia? - I know who I am and I know who my husband is, and that is all I need to know; besides Jesus.

26. Non-Alcoholic Steatorrhea Hepatitis - I have an alcoholic liver and didn't even have the fun of ever drinking or getting drunk.

a. fatty liver

b. heptatomegaly

c. tender liver - this means "PAIN".

d. hepatic encephalopathy

27. Hyperthyroidism/Hypothyroidism - First one, then the other.

28. Hypertension - Ah, might as well throw that in to!

29. Chronic sinusitis - 3 surgeries, another to go...more polyps.

30. Restrictive pulmonary disease - causing air hunger.

31. Asthma - causing air hunger.

32. Gastroesophagel Esophageal Reflux - 'burp', excuse me.

33. Colitis - my whole body is an "...itis"

34. Irritable bowel syndrome - I believe this is a "catch-all syndrome" if a doctor doesn't know and doesn't care what is wrong with you.

35. Hemorrhoids....don't we all!

36. Chronic Bursitis - more pain

37. Tendinitis - can't do too much, or I get it.

38. Fibromyalgia - another "catch-all".

39. Lordosis - has nothing to do with religion...Scoliosis the other way.

40. Sciatica - more pain

41. Chronic fatigue - sleep feels so good, who wants to wake up and move anyway?

42. Peripheral Neuropathy - more pain.

43. myopathy

44. Muscular Dystrophy - Hah! They won't even see me!

45. Brain - borderline frontal lobe disorder, one point off.

46. Heart problems - right chamber enlargement, walls too thin here, too thick there, clogged up here (I'm told it's only mild)

47. Allergies - no kidding! I'm allergic to EVERYTHING!!!!!!! There is only 8 foods that I'm not allergic to...thank God I can eat sugar!

48. Mega muscle cells? - don't know what the medical term is.

49. Megamitochondria with extensive crystilline inclusions - Finally! We have something that is causing all this stuff.

50. DEATH - I actually got a diagnosis of "death" by the University of Pittsburgh Medical Center!

Blessings,

K.

-- Let's See How Many Answers We Get To This

How many of you have been told by various physicians in your search for answers regarding your medical problems that you have symptoms of or a diagnosis of:

1. Lupus

2. MS

3. A Connective Tissue Disorder

4. Lyme

5. An Auto Immune Disorder

6. Chronic Fatigue

7. Fibromyalgia

If anyone can add to this list - please be sure to do so. This list is sent out to everyone so whether you have a Mito diagnosis or just trying to find out - please reply.

AliceMedical 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]

> 50. DEATH - I actually got a diagnosis of " death " by the University of

> Pittsburgh Medical Center!

>

> Blessings,

> K.

Wow, that's quite an impressive list! I'm glad to hear that you're not

actually dead :-/

B

[Guest guest]

So am I!

K.

-- Re: Let's See How Many Answers We Get To This

> 50. DEATH - I actually got a diagnosis of "death" by the University of> Pittsburgh Medical Center!>> Blessings,> K.Wow, that's quite an impressive list! I'm glad to hear that you're notactually dead :-/ BMedical 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]

Maggie,

This is an excellent question and I believe it can be answered in a couple of ways. These are my opinions though - not scientific fact.

I feel that some individuals are dealing with Mito entirely and that they have gotten other diagnoses (lupus, ms, fybro etc) as atypical because they seem to have these diseases. Later testing gives them a more definitive diagnosis as more facts are known. These individuals have biopsies that prove the mito diagnosis.

I believe that others may actually start with some of these other diseases and in fact have them. The diseases destroy the mitochondria thus mitochondrial disease becomes a secondary factor which escalates more difficult symptoms. Thus they are dealing with more than one issue.

Please keep in mind that this is my theory and only because of my involvement with the Mito community for a few years now.

Alice

Probably no clear cut answer to this, but I wondered specifically if someone had a diagnosis of MS or Lupus (for example) would it mean that they were incorrectly diagnosed with MS if they were later diagnosed to have a mitochondrial disease? Or is it possible that they have MS, AND a mitochondrial disease?Maggie

[Guest guest]

Alice,

Your theory makes a lot of sense. Actually, it probably makes more

sense than most answers we'd get from some in the medical community.

Thanks.

Maggie

> Maggie,

>

> This is an excellent question and I believe it can be answered in

a couple of ways. These are my opinions though - not scientific

fact.

>

> I feel that some individuals are dealing with Mito entirely and

that they have gotten other diagnoses (lupus, ms, fybro etc) as

atypical because they seem to have these diseases. Later testing

gives them a more definitive diagnosis as more facts are known.

These individuals have biopsies that prove the mito diagnosis.

>

> I believe that others may actually start with some of these other

diseases and in fact have them. The diseases destroy the

mitochondria thus mitochondrial disease becomes a secondary factor

which escalates more difficult symptoms. Thus they are dealing with

more than one issue.

>

> Please keep in mind that this is my theory and only because of my

involvement with the Mito community for a few years now.

>

> Alice

>

> Probably no clear cut answer to this, but I wondered specifically

if

> someone had a diagnosis of MS or Lupus (for example) would it mean

> that they were incorrectly diagnosed with MS if they were later

> diagnosed to have a mitochondrial disease? Or is it possible that

> they have MS, AND a mitochondrial disease?

>

> Maggie

[Guest guest]

DEATH!!!!

Now I really have heard it all!

Glad you are ALIVE and kicking!

God bless,

Hazelpone

-- Re: Let's See How Many Answers We Get To This

> 50. DEATH - I actually got a diagnosis of "death" by the University of> Pittsburgh Medical Center!>> Blessings,> K.Wow, that's quite an impressive list! I'm glad to hear that you're notactually dead :-/ BMedical 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]

That is exactly what Dr. son told me. Which came first...the mito or the disease?

- K.

-- Re: Let's See How Many Answers We Get To This

Maggie,

This is an excellent question and I believe it can be answered in a couple of ways. These are my opinions though - not scientific fact.

I feel that some individuals are dealing with Mito entirely and that they have gotten other diagnoses (lupus, ms, fybro etc) as atypical because they seem to have these diseases. Later testing gives them a more definitive diagnosis as more facts are known. These individuals have biopsies that prove the mito diagnosis.

I believe that others may actually start with some of these other diseases and in fact have them. The diseases destroy the mitochondria thus mitochondrial disease becomes a secondary factor which escalates more difficult symptoms. Thus they are dealing with more than one issue.

Please keep in mind that this is my theory and only because of my involvement with the Mito community for a few years now.

Alice

Probably no clear cut answer to this, but I wondered specifically if someone had a diagnosis of MS or Lupus (for example) would it mean that they were incorrectly diagnosed with MS if they were later diagnosed to have a mitochondrial disease? Or is it possible that they have MS, AND a mitochondrial disease?MaggieMedical 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.