Re: PubMed--benign CPK elevation-Laurie

[Guest guest]

Laurie,

How long does it take to get into your doctor in Michigan. The one you and

Barry go to?

I am going to call his office tomorrow. Can I use you as a referral maybe?

Let me know.

Laureta Fitzgerald lfitzger@...> wrote:

In my opinion, you could still have mito. My symptoms were similar to yours

about 15 or more years ago. They are somewhat controlled with meds,

supplements and use of adaptive equipment at this time.

My labs were all normal, including CK. It wasn't until I had a fresh muscle

biopsy that I finally got a diagnosis. Had I not done this, I probably would

still not have a diagnosis.

Good luck with your travels to a diagnosis. It took me 15 years, so I know

how frustrating it can be.

laurie

>

> Reply-To:

> Date: Sun, 17 Oct 2004 16:09:57 -0700 (PDT)

> To:

> Subject: Re: PubMed--benign CPK elevation

>

>

> First let me tell you all that my doctor didn't think that this " disorder will

> NOT progress very badly. " Let me assure everyone that in the past three years

> I have gotten worse than at any other time in my life.

>

> I get cramps from my ankles to the middle of my back just standing and doing

> the dishes. Whenever I stand at any length of time I have to sway back and

> forth because if I don't I will be crying.

>

> She also dismisses the other symptoms I have saying they are not related to

> this. I have muscle twitching from minor to moderate. Once in awhile I will

> get a twinge in my head and either my upper body will jerk or my whole body

> will jerk.

>

> I get slurred speech when I get tired (from not really doing anything). I

> come close to blacking out on several occasions. My mind freezes up all the

> time.

>

> But the reason she doesn't think that it is a mito disorder is that all my

> other tests have come back normal except the elevated CK's.

>

> My question is can this really be a MITO disorder or not?

>

>

> Young jlyoung@...> wrote:

> Barbara, I remember talking once with a doctor who said that McArdle's is a

> relativley bening condition and I said, well if you were in my body you

> wouldn't say that! ha He quickly said yes, it sure wouldn't feel benign,

> and I don't mean to make it sound like that.

> So I guess when he said benign, which is the way MDA puts it too, he means

> it won't neccesarily kill you, unless you get renal shut down of course,

> which is always a threat.

> Just the word benign botheres me though as it makes something that is so

> life changing and horrilbe pain sound like it is " nothing to be concerned

> about " To me it is an insult for it ever to be mentioned as that and think

> it should be done away with in any literature that is labeled like that.

>

> Smiles,

>

>

> PubMed--benign CPK elevation

>

>

>>

>> Just to add that the label " benign " as applied to muscle disease is

>> at least partly in the eye of the beholder. When I first went to the

>> NIH in 1985, Dr. Dalakas told me that CPT deficiency is a " very

>> benign " disease and he repeated this on several occasions. Another

>> CPT researcher, Dr. Vladutiu, strongly disagrees. She says: " The

>> disorder [CPT deficiency] has even been called " benign " in some

>> scientific reports which could not be farther from the truth among

>> individuals who have experienced life-threatening kidney failure

>> following a severe episode of rhabdomyolysis (trigger-induced muscle

>> breakdown). "

>> Quote from: http://www.fodsupport.org/cpt2.htm

>>

>>> Take care,

>> Barbara

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> 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]

All I know is that he is no longer seeing patients privately in Farmington

Hills. My next appointment to see him is in Garden City. I don't know if he

is still doing MDA clinics in Farmington Hills or just in Lansing. So, I

have no idea where you would see him and how long it would take to get in. I

do know my appointment to see him in Garden City was changed to a later

date. This makes me think he is as busy as usual. I think you would do

better to see him in clinic.

laurie

>

> Reply-To:

> Date: Sun, 17 Oct 2004 16:45:34 -0700 (PDT)

> To:

> Subject: Re: PubMed--benign CPK elevation-Laurie

>

> Laurie,

>

> How long does it take to get into your doctor in Michigan. The one you and

> Barry go to?

>

> I am going to call his office tomorrow. Can I use you as a referral maybe?

>

> Let me know.

>

>

>

> Laureta Fitzgerald lfitzger@...> wrote:

>

>

> In my opinion, you could still have mito. My symptoms were similar to yours

> about 15 or more years ago. They are somewhat controlled with meds,

> supplements and use of adaptive equipment at this time.

>

> My labs were all normal, including CK. It wasn't until I had a fresh muscle

> biopsy that I finally got a diagnosis. Had I not done this, I probably would

> still not have a diagnosis.

>

> Good luck with your travels to a diagnosis. It took me 15 years, so I know

> how frustrating it can be.

>

> laurie

>

>>

>> Reply-To:

>> Date: Sun, 17 Oct 2004 16:09:57 -0700 (PDT)

>> To:

>> Subject: Re: PubMed--benign CPK elevation

>>

>>

>> First let me tell you all that my doctor didn't think that this " disorder

>> will

>> NOT progress very badly. " Let me assure everyone that in the past three

>> years

>> I have gotten worse than at any other time in my life.

>>

>> I get cramps from my ankles to the middle of my back just standing and doing

>> the dishes. Whenever I stand at any length of time I have to sway back and

>> forth because if I don't I will be crying.

>>

>> She also dismisses the other symptoms I have saying they are not related to

>> this. I have muscle twitching from minor to moderate. Once in awhile I will

>> get a twinge in my head and either my upper body will jerk or my whole body

>> will jerk.

>>

>> I get slurred speech when I get tired (from not really doing anything). I

>> come close to blacking out on several occasions. My mind freezes up all the

>> time.

>>

>> But the reason she doesn't think that it is a mito disorder is that all my

>> other tests have come back normal except the elevated CK's.

>>

>> My question is can this really be a MITO disorder or not?

>>

>>

>> Young jlyoung@...> wrote:

>> Barbara, I remember talking once with a doctor who said that McArdle's is a

>> relativley bening condition and I said, well if you were in my body you

>> wouldn't say that! ha He quickly said yes, it sure wouldn't feel benign,

>> and I don't mean to make it sound like that.

>> So I guess when he said benign, which is the way MDA puts it too, he means

>> it won't neccesarily kill you, unless you get renal shut down of course,

>> which is always a threat.

>> Just the word benign botheres me though as it makes something that is so

>> life changing and horrilbe pain sound like it is " nothing to be concerned

>> about " To me it is an insult for it ever to be mentioned as that and think

>> it should be done away with in any literature that is labeled like that.

>>

>> Smiles,

>>

>>

>> PubMed--benign CPK elevation

>>

>>

>>>

>>> Just to add that the label " benign " as applied to muscle disease is

>>> at least partly in the eye of the beholder. When I first went to the

>>> NIH in 1985, Dr. Dalakas told me that CPT deficiency is a " very

>>> benign " disease and he repeated this on several occasions. Another

>>> CPT researcher, Dr. Vladutiu, strongly disagrees. She says: " The

>>> disorder [CPT deficiency] has even been called " benign " in some

>>> scientific reports which could not be farther from the truth among

>>> individuals who have experienced life-threatening kidney failure

>>> following a severe episode of rhabdomyolysis (trigger-induced muscle

>>> breakdown). "

>>> Quote from: http://www.fodsupport.org/cpt2.htm

>>>

>>>> Take care,

>>> Barbara

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>> 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.

>>>

>>>