Doctor's visit

[Guest guest]

I took B-12 shots they didn't seem to help me any or I couldnt' tell no

difference. I eventually quit them but they may help you cause there is some

they do help!! I think it is an idividual thing there whether it is for you or

not. I haven't took any of those meds my doctor has to go with something mild

because I am sensitive to alot of stuff and can't take it!! I have had alot of

reactions to stuff. I try to find or get more natural stuff. I am on Naproxon

500 mg 4 times a day but can only take it for 2 weeks and have to go to asprins

or tylenol p.m. cause it doesn't seem to help if I don't alternate!!! Hope

this helps some!! shirley

Doctor's visit

I was back at my doctor's on Saturday. So far, my blood looks good.

We're still waiting for the ANA titer to come back though. So, I'm

leaning away from the Lupus diagnosis. But I'm not totally ruling it

out. A very cool thing is that my doctor has started to read up on

fibro, from sources he considers reliable. :-) This from the doctor

who 2 weeks ago was trying to come up with excuses for scoffing at

fibro. I'm so happy he's taking this seriously.

I have a few questions for everyone. Is anyone getting B-12

injections, and do you find that they help? I was given one on

Saturday, and could continue with them if they help. I don't know

what dosage I was given. So far, I haven't noticed a difference, but

I thought maybe it's one of those things that needs to accumulate in

you system somewhat.

Also, my doctor told me to look up Zanaflex, and gave me a few samples

(I have to talk to him again before I start them). Is anyone on this

muscle relaxant? How severe are the side effects, especially being on

Zoloft? Does it help with the muscle pain, or just relax the muscles?

Or both? I would like to try it, as I've thought for months that a

muscle relaxant would be of great benefit, but I feel I need more

info. Anyone who can, please let me know.

Thank you, and take care everyone.

[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

Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free.

[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

Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free.

[Guest guest]

Bonnie,

You story sounds exactly like mine. Go to s Hopkins. Do not pass

go, do not collect 200.00. Girl, keep looking for someone to give you a

firm diagnosis and treatment. I have been told everything from MS (was

treated for 9 months) to somatoform disorder (it is all in your head).

I started out with problems with shingles on the left face, then chronic

Bell's Palsy and trigeminal neuralgia, then optic neuritis, then

neurogenic bladder, etc. I am still not diagnosed although Dr.

in neurology stated he felt is was NS and I am not being treated. I

really like s Hopkins but my doc will not send me back. Now I am

going to go to Charlotte, NC to see a Neuro-Urologist named Dr.

Kennelly., but who knows when.

Well, I went off on a tangent. Do not be discouraged. You know what is

going on with your body and whether or not anyone believes what is going

on, keep saying the same thing. I will keep you in my thoughts and

prayers.

Terri G.

>

> 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]

Bonnie,

You story sounds exactly like mine. Go to s Hopkins. Do not pass

go, do not collect 200.00. Girl, keep looking for someone to give you a

firm diagnosis and treatment. I have been told everything from MS (was

treated for 9 months) to somatoform disorder (it is all in your head).

I started out with problems with shingles on the left face, then chronic

Bell's Palsy and trigeminal neuralgia, then optic neuritis, then

neurogenic bladder, etc. I am still not diagnosed although Dr.

in neurology stated he felt is was NS and I am not being treated. I

really like s Hopkins but my doc will not send me back. Now I am

going to go to Charlotte, NC to see a Neuro-Urologist named Dr.

Kennelly., but who knows when.

Well, I went off on a tangent. Do not be discouraged. You know what is

going on with your body and whether or not anyone believes what is going

on, keep saying the same thing. I will keep you in my thoughts and

prayers.

Terri G.

>

> 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]

Connie,

Thanks for your reply. I am going to make my appointment with s Hopkins. I have a good friend who will drive me there, as it's 3 hours away. I actually waas sent there 5 years ago by the doctor who originally diagnosed me. I saw Dr. Moeller there, head of the sarc clinic. He said that without biopsy he stillfeels that it's multisystem sarc but because of my family history of autoimmune disorders, he also had some reservations. So, what will be different this time?? Probaby nothing. I will go anyway, as I have no other good alternative.

My husband is a moot point anymore. I have prayed over his total abandonment of me in this and have accepted that he is not capable of handling this. He also has done more, much more. I have to face the fact that he is out of the picture and the most support I will get from him from now on is alimony!! Ive been married for 28 yrs and deserve better!! Of course, it's kind of scary to consider being single again will all that's going on health wise. I know it sounds like I'm a cold hearted woman but the truth is I've had to grow a thick skin living with this person. It started in small ways, like walking 20 ft in front of me cause I walk slower. Then, he would park in the back of the parking lot, the furthest away from the movie theater that he could get. I would look across the lot and just say," I can't walk that far". He'd park and leave me to follow as best I could. You all know how that feels when someone doesn't accomodate you out of ignorance?? He knew I couldn't walk!! So yeah, small stuff like that. Then, he would take the family for outings and leave me home because I couldn't walk all over the city or where ever he planned to go. Now, I am not an ugly, mean-spirited, woman. I clean up well. None of my friends are embarassed to be seen with me.This was how I had been treated. No more. I will not be treated as less than just because I am sick.

I know many of you also have to deal with this subject. We all look pretty much the same on the outside. I believe there's even a peom on this subject.People assume because we look okay, we ARE okay. Inside, I feel like an 80 yr old woman some days. I still work, cook, clean (not as much,it's been 100 degrees here), garden, quilt, and some days, entertain when the mood strikes. It takes a heavy toll. I'm not ready to admit I can't do it all. Especially with my husband around. I smile and sing and pretend all's right in my little corner of the world. Thank you all for listening. May your days be pain free!!!

Bonnie B

[Guest guest]

Connie,

Thanks for your reply. I am going to make my appointment with s Hopkins. I have a good friend who will drive me there, as it's 3 hours away. I actually waas sent there 5 years ago by the doctor who originally diagnosed me. I saw Dr. Moeller there, head of the sarc clinic. He said that without biopsy he stillfeels that it's multisystem sarc but because of my family history of autoimmune disorders, he also had some reservations. So, what will be different this time?? Probaby nothing. I will go anyway, as I have no other good alternative.

My husband is a moot point anymore. I have prayed over his total abandonment of me in this and have accepted that he is not capable of handling this. He also has done more, much more. I have to face the fact that he is out of the picture and the most support I will get from him from now on is alimony!! Ive been married for 28 yrs and deserve better!! Of course, it's kind of scary to consider being single again will all that's going on health wise. I know it sounds like I'm a cold hearted woman but the truth is I've had to grow a thick skin living with this person. It started in small ways, like walking 20 ft in front of me cause I walk slower. Then, he would park in the back of the parking lot, the furthest away from the movie theater that he could get. I would look across the lot and just say," I can't walk that far". He'd park and leave me to follow as best I could. You all know how that feels when someone doesn't accomodate you out of ignorance?? He knew I couldn't walk!! So yeah, small stuff like that. Then, he would take the family for outings and leave me home because I couldn't walk all over the city or where ever he planned to go. Now, I am not an ugly, mean-spirited, woman. I clean up well. None of my friends are embarassed to be seen with me.This was how I had been treated. No more. I will not be treated as less than just because I am sick.

I know many of you also have to deal with this subject. We all look pretty much the same on the outside. I believe there's even a peom on this subject.People assume because we look okay, we ARE okay. Inside, I feel like an 80 yr old woman some days. I still work, cook, clean (not as much,it's been 100 degrees here), garden, quilt, and some days, entertain when the mood strikes. It takes a heavy toll. I'm not ready to admit I can't do it all. Especially with my husband around. I smile and sing and pretend all's right in my little corner of the world. Thank you all for listening. May your days be pain free!!!

Bonnie B

[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