fitting into groups

[Guest guest]

Once again I find myself fitting into mito groups and having more questions than

answers! I have had a headache for about 6 weeks now and it is not my usual

migraine. After being seen a second time within a month, my

neuro-opthalmologist asked questions and he thinks I have a very minor CSF leak

causing a spinal type headache. I think this is on target...and was amazed that

this was discussed at length last week concerning hydration.

Today's question about an auto-immune poll...I was diagnosed with Lupus in 1995

more by symptoms and not lab tests...my ANA has always been negative as has my

LE slide. Joint pain, fevers, infections and then vasculitis that attacked my

CNS and led to plasmaphoresis and chemotherapy all have come under the

Lupus/auto immune heading and then there is the hearing issue and it can fall

under that too. I think all too often a blanket diagnosis is given when doctor

flat don't have answers and I was even told in the spring, Are you sure this is

Lupus? Right now Lupus is a very popular way to bill for symptoms without

answers! Many of my doctors say it is not, but now we are pushing for mito

testing since I can see symptoms in two of my three kids.

Seasonally, the heat of summer is much worse on me...a simple trip to the

grocery, a half mile away, takes my entire supply of oomph to complete and this

is just for a couple of items, my husband does the family shopping. Winter, if

we get one here in Texas is a relief...but again I have to watch the blue hands

and feet.

Debra

[Guest guest]

--- I agree with the CFS thing. I believe a lot of patients dx with

CFS have a mito problem. I believe people with CFS truley have

something wrong with them. But I do not believe in the CFS dx. I

feel the diagnostic criteria is too broad and different illness can

fall into it. I believe cFS to be just a label and many different

things cause these problems. Just a thought.

dawn a

In , " thefourofus03 "

wrote:

> Debra,

>

> You say Lupus is the blanket, which I too believe, but I am just

> as sick of chronic fatigue syndrome. I am sure that this exists,

but

> I beleive that there is more mito there than anyone knows. I bet

you

> can find alot of people here who originaly recieved a CFS label

> before ever hearing of mito. I have had many docs believe that

what

> i was dealing with was LUPUS than the ana comes back negative and

I

> once again have no answers. It must be CFS, very frustrating.

>

>

> Dawn