One disease is not enough?

[Guest guest]

Recently spoke to my other neurologist, the one in NYC. He said that I

not only have indications of sarcoidosis, but still also show symptoms

of CIDP (chronic inflammatory demyelinating polyneuropathy). My

internist explained today that sometimes these diseases do not have a

nice clean defining set of symptoms, there may be crossover to similar

diseases. She gave Lupus as an example. And I thought just having one

or the other was bad enough, but two? At any rate I am being treated

and besides cranky ankles and feet, seem to be making progress - at

least lately. Funny how cautious I have become about being optimistic.

One of weird things about this is that they need to do some sort of

biopsy to find a definitive diagnosis, yet they don't dare because the

tests could trigger more problems or cause complications because of

the medications I am on. Sometimes it feels like I am caught in some

strange pinball game, bouncing from point to point, not able to find a

direction. I feel emotionally bruised from all the bouncing. Know what

I mean? In spite of it all I don't feel depressed. I am looking

forward to spring. Working in the yard. Seeing birds and butterflies.

Planning a butterfly garden this year. Thanks for " listening " -

[Guest guest]

I know what you are feeling i also have TTP so i have to deal with

both. I think we just drew the short straw when our immune systems

were made!

>

> Recently spoke to my other neurologist, the one in NYC. He said

that I

> not only have indications of sarcoidosis, but still also show

symptoms

> of CIDP (chronic inflammatory demyelinating polyneuropathy). My

> internist explained today that sometimes these diseases do not have

a

> nice clean defining set of symptoms, there may be crossover to

similar

> diseases. She gave Lupus as an example. And I thought just having

one

> or the other was bad enough, but two? At any rate I am being treated

> and besides cranky ankles and feet, seem to be making progress - at

> least lately. Funny how cautious I have become about being

optimistic.

>

> One of weird things about this is that they need to do some sort of

> biopsy to find a definitive diagnosis, yet they don't dare because

the

> tests could trigger more problems or cause complications because of

> the medications I am on. Sometimes it feels like I am caught in some

> strange pinball game, bouncing from point to point, not able to

find a

> direction. I feel emotionally bruised from all the bouncing. Know

what

> I mean? In spite of it all I don't feel depressed. I am looking

> forward to spring. Working in the yard. Seeing birds and

butterflies.

> Planning a butterfly garden this year. Thanks for " listening " -

>

[Guest guest]

, I am glad that you are keeping a good outlook 'despite' the news you've been given. When I first got into my last bad flare, it seemed like it was dominoes... falling one right after another. Even my doc said I was having one bad year that year and he gave me a hug. I would suggest some (very) gentle stretching and heat for your back. But if it hurts to stretch...even just a little...stop. There is a fine line with sarc. You need to do abit of stretching or walking, if you can, but overdoing exercise can put you back into agony. Speaking of Spring...I am leaving within the hour to go see The Domes in Milwaukee.(WI) It's an exhibit of flowers. There are three of them...one, arid(desert plants)...one, rain-forest, and one just full of all the regular flowers. The flowers in that exhibit are changed three or four times a year. They even have a

butterfly exhibit where one of the domes also has loads of them and they land all over you. My husband took the day off and we're taking my wheelchair so I don't overdo it. Take care and hugs S.wendy_cidp wrote: Recently spoke to my other neurologist, the one in NYC. He said that Inot only have indications of sarcoidosis, but still also show symptomsof CIDP (chronic inflammatory demyelinating polyneuropathy). Myinternist explained today that

sometimes these diseases do not have anice clean defining set of symptoms, there may be crossover to similardiseases. She gave Lupus as an example. And I thought just having oneor the other was bad enough, but two? At any rate I am being treatedand besides cranky ankles and feet, seem to be making progress - atleast lately. Funny how cautious I have become about being optimistic.One of weird things about this is that they need to do some sort ofbiopsy to find a definitive diagnosis, yet they don't dare because thetests could trigger more problems or cause complications because ofthe medications I am on. Sometimes it feels like I am caught in somestrange pinball game, bouncing from point to point, not able to find adirection. I feel emotionally bruised from all the bouncing. Know whatI mean? In spite of it all I don't feel depressed. I am lookingforward to spring. Working in the yard. Seeing birds and

butterflies.Planning a butterfly garden this year. Thanks for "listening" -

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