Doctor's visit

[Guest guest]

I am so frustrated. I know you all have been where I'm at but I

ended up crying in my Rheumologists office yesterday. I am so

embarrased. This is the doctor I've been seeing for 5 years. My

diagnosis was never biopsy confirmed and she never has been

convinced it was sarcoid. About six months ago, I had burned my hand

and had no pain response so when I saw her, she felt it was ms. Sent

me to the neuro,did all the tests. Everything came back normal

except elevated ACE level in my spinal fluid. My toes are all numb,

my legs are now vibrating, I have alot of pain in my hands,feet,

hips. Uveitis in my eye, 6 yrs. I drop everything at least once, if

not more. I am having trouble walking, which I have attributed to

the numb toes but Im not sure. I am now taking so long to get ready

for work that if I don't get up alot earlier, I'm running late. I

burn dinner almost every night, unusual for me. I am fed up,

frustrated.

So, yesterday when I went back to see her after all these tests, I

told her that the neuro gut, who admitted to me he's never treated

anyone for neuro sarc, wants me to go to s Hopkins sarcoid

clinic. She agrees but then questioned any treatment for me. She

won;t put me on any sort of treatment other than pain management

because of the toxicity involved and the fact that any treatment

could mask real sypmtoms that need to be recognized. It makes sense.

I know it does. But, I'm at the point where I need to maybe cut back

on work and need someone other than myself to recognize that. My co-

workers all say, you're walking funny, stuff like that. They see it.

Why can't she?? Maybe I need to find a new rheumolotogist.. I don't

know. My husband thinks I'm nuts. Bonnie B

[Guest guest]

Thanks Marla. I know I'm with people who understand and are compassionate. I can't tell you how much that means to me as I do NOT have that at home. I am going yo be getting divorces as soon as this coming school year is over. My husband does not wish to know and does not care to learn about my illness. Told me he can't deal with it. Well, I dont have that choice but I can choose how to live with it. I choose to live as best I can with support from my friends like you and my friends in my life. I know I'll be okay.

Bonnie B.

Doctor's visit

I am so frustrated. I know you all have been where I'm at but I

ended up crying in my Rheumologists office yesterday. I am so

embarrased. This is the doctor I've been seeing for 5 years. My

diagnosis was never biopsy confirmed and she never has been

convinced it was sarcoid. About six months ago, I had burned my hand

and had no pain response so when I saw her, she felt it was ms. Sent

me to the neuro,did all the tests. Everything came back normal

except elevated ACE level in my spinal fluid. My toes are all numb,

my legs are now vibrating, I have alot of pain in my hands,feet,

hips. Uveitis in my eye, 6 yrs. I drop everything at least once, if

not more. I am having trouble walking, which I have attributed to

the numb toes but Im not sure. I am now taking so long to get ready

for work that if I don't get up alot earlier, I'm running late. I

burn dinner almost every night, unusual for me. I am fed up,

frustrated.

So, yesterday when I went back to see her after all these tests, I

told her that the neuro gut, who admitted to me he's never treated

anyone for neuro sarc, wants me to go to s Hopkins sarcoid

clinic. She agrees but then questioned any treatment for me. She

won;t put me on any sort of treatment other than pain management

because of the toxicity involved and the fact that any treatment

could mask real sypmtoms that need to be recognized. It makes sense.

I know it does. But, I'm at the point where I need to maybe cut back

on work and need someone other than myself to recognize that. My co-

workers all say, you're walking funny, stuff like that. They see it.

Why can't she?? Maybe I need to find a new rheumolotogist.. I don't

know. My husband thinks I'm nuts. Bonnie B

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[Guest guest]

I know I'm with people who understand and are compassionate. I can't tell you how much that means to me as I do NOT have that at home

Bonnie,

After reading through your posts, I can tell you you are not a cold-hearted woman, and yep you do deserve better. It's a bummer, but if the hassle of living with someone who refuses to accept or acknowledge that you have special needs becomes an increasing component in the stress of being sick- you do need to way which is better.

I do hope that you've ordered a copy of BUT YOU LOOK GREAT! at the Invisible Disabilities Advocate website. It's wonderful, and you can read the first chapter online at the site. http://www.myida.org/

I know this booklet has been one that has helped so many of us. Check it out.

Take care,

Tracie

NS co-owner/moderator

[Guest guest]

I know I'm with people who understand and are compassionate. I can't tell you how much that means to me as I do NOT have that at home

Bonnie,

After reading through your posts, I can tell you you are not a cold-hearted woman, and yep you do deserve better. It's a bummer, but if the hassle of living with someone who refuses to accept or acknowledge that you have special needs becomes an increasing component in the stress of being sick- you do need to way which is better.

I do hope that you've ordered a copy of BUT YOU LOOK GREAT! at the Invisible Disabilities Advocate website. It's wonderful, and you can read the first chapter online at the site. http://www.myida.org/

I know this booklet has been one that has helped so many of us. Check it out.

Take care,

Tracie

NS co-owner/moderator