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

[Guest guest]

Hi Maggie,

This is an important point. Some medical practitioners consider

identifying a set of symptoms that has been named (for example

fibromyalgia, arthralgia, chronic fatigue syndrome) as a successful

diagnosis as opposed to identifying through tests the actual

biochemical process that is causing the symptoms. Often they will

prescribe the accepted medication and see if the treatment works. I

think they do this with good intentions because running tests takes

more time, can be uncomfortable for the patient, and can cost a lot

more than a trial prescription and they want to get results quickly.

Most of the time (but often not for us mito folk) that will work just

fine.

For example, I had symptoms of MS (among other things) in the early

1990's, but it was only after a second set of EMG tests, blood and

urine tests, an ischemic forearm test, and a muscle biopsy done from

May through November in 1997 that the underlying cause of the symptoms

was identified as mitochondrial disease.

Another big problem is that too get insurance coverage for medical

treatment a patient has to be assigned a numeric diagnosis code. The

presupposes that all possible medical conditions have been identified

and are well characterized, which we list members know is not at all

true. Unfortunately that is the current business model.

Anyway, I know how frustrating it can be to try to get diagnosed

properly. It is good we have this list for venting. 8^)

Kathy G. in Milwaukee

> What I'm wondering is... do most of us really have multiple problems

> (correctly diagnosed with a lot of these other issues) -- or has it

> been determined that the mitochondrial problem is actually

> responsible for most, if not all, of these issues?

>

> 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]

Vivian,

I get a flu shot every year. With as many respiratory problems as I have, I can't afford to not get one!

Smiles,

a

By the way...Are you guys getting flu shots?

[Guest guest]

hey guys,

I know this was posted awhile back ago, but thought since I've been diagnosed with so many of these things I would say so. I was first diagnosed with:

1) Chronic fatigue syndrome at age 11 though my symptoms started before then when they only said it was growing pains, developmental issues and hypotonia

2) shortly after they began to suspect juvinile rheum. arthritis but said it was an atypical case and I never got a clear diagnosis

3) as my symptoms progressed in my mid-teens they first gave me several psychiatric diagnosises especially anxiety disorders

4) at 18 they said it was fibromyalgia and UCTD (unspecified connective tissue disease)

5) at 19 they told me I had lupus and sjogrens syndrome (the tests went back and forth with that) they also suspected I had CNS vasculitis due to my symptoms

6) at 20-21 they found that I had dysautonomia and felt that was secondary to mixed connective tissue disease because I fit so many autoimmune disorders

7) they began to wonder if I had a neuromuscular disorder- first looking into MS and MG but my rheumatologist still felt I had some sort of autoimmune disorder too but felt it was secondary to a systemic infection like lyme

8) Finally about 2 yrs ago mito came into the picture or had been suggested several times so they decided to look into that more than anything

9) seems now that the doctors believe that I have mito along with something else- some say its an autoimmune disorder and some say a chronic infection, but now they do believe that I've had issues with mito all my life and then in my mid-to-late teens some secondary issue made it all worse.

10) Dr. Shoffner is really thinking its antiphopholipid syndrome and said that it could be causing my arthritis, skin issues and adding to my SLE's and other vasculitis type symptoms.

11) He also suggested porphyria as have several other doctors since I fit alot of its symptoms too, but at least finally the drs are realizing mito is my main prob, even though I dont have a diagnosis yet- lets hope for one by March with the muscle biopsy and all the other tests dr. shoffner earlier this month.

I know I've had several other things suggested, but these are the main ones. I also wanted to make a comment about autoimmune probs and mito- is it possible for the antibodies that cause the issues with autoimmune disorders (especially lupus) to actually attack the mitochondria? I'm just wondering if maybe that might be some people issues- that the lupus, etc came first and then it ended up attacking the cells and mitochondria even. Just a thought.

Hope everyone is doing ok, my biopsy site is doing alot better, dr finally said the issues werent infection but just due to excessive bleeding under the skin causing swelling etc. I'm going out of town for 3 days tomorrow- will be thinking about everyone. Hope to be able to start posting more after that. Till then.....

take care,

Adrienne

[Guest guest]

Hello Adrienne,

I think you are onto something. Seems that so many of us have symptoms

of autoimmune disease.

My current pet theory is that apoptosis or normal programmed cell death

(as opposed to necrosis when an injured cell dies) may not be

functioning properly with mito. After the dying cell's nucleus is taken

apart, the mitochondria control the final steps of the process of

dissolution. So some cell contents might be spilled to produce

antibodies. I became familiar with this because I have been working on

publications about anti-cancer therapy and inducing apoptosis is one of

the mechanisms for treating cancers.

With mito we probably have a lot of stressed out cells dying abnormally

too. I think almost everyone on the list has written about overdoing

things and getting really ill.

Good luck. Seems like you can spend an entire lifetime ruling out

possibilities with tests. Sorry you have been through so much.

Kathy G.

Milwaukee WI USA - " in the bleak mid-winter "

On Tuesday, December 16, 2003, at 05:33 PM, moonchild62579@...

wrote:

> I also wanted to make a comment about autoimmune probs and mito- is

> it possible for the antibodies that cause the issues with autoimmune

> disorders (especially lupus) to actually attack the mitochondria? I'm

> just wondering if maybe that might be some people issues- that the

> lupus, etc came first and then it ended up attacking the cells and

> mitochondria even. Just a thought.