Re: Stanford

February 15, 2006

,

I don't post very often, but, I too have gone to Stanford for many years. I

used to see a doctor that is no longer there. I got great help and good

medications. I was able to get on a good " cocktail " that my doctors here in

Fresno, just were either too afraid to use or just not willing to try.

Currently doing fairly well with PA. I used a cane for almost six years, but

haven't

had to use one in the past year and a half.

Have a safe trip.

Amy Deel

February 15, 2006

Dear ,

Fantastic. I was treated very well and my husband- who had to drive me- was

also treated as a partner in my illness! The Dr. I see is Dr. Utz- I

have not been there for about 2 years - so he may not be there - my insurance

has changed and it is a $500.00 copay for each visit. I can still call

there for help and E-mail the Rheumatology Dept - everyone is very helpful and

informative - they give you the reason not just the " do this " kinda thing.

They did lots of blood work and exrays - all happened the same day. Then the

Dr. actually called me with the results. If you want to talk - I will be home

tomorrow - 209-466-6235.

Good Luck,

Carol

February 20, 2006

Hi Carol and Amy,

Thanks so much for your feedback and support!

I am back home in Idaho now after my visit and I am not really sure what to

think, but I can say the visit didn't live up to what I had somehow hoped, but

perhaps I was unrealistic....

I went to Stanford because I have intermittent pain in my back and hips and

constant pain on the bottoms of my feet and the top tendon of my right foot and

fatigue which do not seem to improve with the MTX and Remicade treatments. I

have a sense it is not part of the PsA, but I did not know for sure and wished

to go to one place where they could look at the entire situation, take tests,

etc...

What actually happened was since I am NOT exhibiting the symptoms of PsA (I'm

on the Remicade and MTX which have worked very well for the joint and skin

issues) the doctor isn't convinced I have PsA ~ he isn't not convinced either he

says, but his entire exam seemed to center around how flexible my joints are and

the very strong assumption THIS is causing my problem. He allowed me that the

flare of my right foot, ankle and knee which left me unable to walk or even

drive a car for two weeks prior to the beginning of Remicade and MTX) were

consistent with PsA, as were some eye issues I've been dealing with, but as they

were in the past and not evident last week, they seem almost unbelievable I

guess... He said some of the symptoms I was seeking help on could be caused by

the medications, but it isn't clear which ones (although I know the fatigue

could be)...

So, it appears after going through this for four years prior to my diagnosis

(May 04) I am now back to square one. He has taken me off the hard core drugs

and put me on Sulfasalazine as he says they rarely treat PsA with the Biologics.

I guess aggressive treatment is not their philosophy, rather start from the

beginning and work up.

It has been my wish to try to get off the heavy duty medications and this is

one I have not tried before, so I am willing to try.

Has anyone else been told their joints are too flexible and this could be

causing their problems?

February 20, 2006

Dear ,

At first, I felt like you and told my Dr. He called Dr. Utz at Stanford to

verify some of my issues. But according to Dr. Utz, they don't say anything

until they get back the results from the bood work and exrays that they did

on me. I know that he is a Head Professor and does researach on medication in

Holland, so I assume that other Dr's follow his example. But I did walk in

with a positive RA factor and PA, so I was probably a slam-dunk when it came

to diagnosis. But he did call me at home to explain many of the

abnormalities. So I think that it may just take some time for all things to be

analyzed. I know that my Dr. took my case information to his group to review

and

discuss options for my medication. And whatever they did, it is working pretty

well. I wish this for you, too.

, please do not give up, this is a battle and just because there is no

name does not mean there is not disease or pain. I started this battle with

gout and then osteomyelitis until I almost lost my foot - then to RA and PA

and Sjorgrens and now Lupus!!!!!!!!!!!!!!!!!!! it is called Mixed Connective

Tissue Disorder and it is a daily battle -

Please continue to keep looking up and I will continue to pray for you. My

offer still holds true if you want to talk or communicate via direct E-mail.

Gentle Hugs & Prayers,

Carol M. in CA

February 20, 2006

Hi ...sorry to hear you're back to square one. I know that

frustration personally. I hope you find the answers you need quickly.

I'm not sure what you mean by " very flexible joints " exactly but

there are diseases where that is a symptom. Did your dr mention this,

or a disease name? I'm not very familiar with them but I know one is

called Ehlors-Danlos Syndrome. It may even be classified as a

rheumatoid condition. You might want to research that. I don't know

if any of the other symptoms you suffer with might be symptoms as

well.

Wish you the best on your quest for answers.

Michele

Dallas

>

> Hi Carol and Amy,

>

> Thanks so much for your feedback and support!

>

> I am back home in Idaho now after my visit and I am not really

sure what to think, but I can say the visit didn't live up to what I

had somehow hoped, but perhaps I was unrealistic....

>

> I went to Stanford because I have intermittent pain in my back

and hips and constant pain on the bottoms of my feet and the top

tendon of my right foot and fatigue which do not seem to improve with

the MTX and Remicade treatments. I have a sense it is not part of

the PsA, but I did not know for sure and wished to go to one place

where they could look at the entire situation, take tests, etc...

>

> What actually happened was since I am NOT exhibiting the symptoms

of PsA (I'm on the Remicade and MTX which have worked very well for

the joint and skin issues) the doctor isn't convinced I have PsA ~ he

isn't not convinced either he says, but his entire exam seemed to

center around how flexible my joints are and the very strong

assumption THIS is causing my problem. He allowed me that the flare

of my right foot, ankle and knee which left me unable to walk or even

drive a car for two weeks prior to the beginning of Remicade and MTX)

were consistent with PsA, as were some eye issues I've been dealing

with, but as they were in the past and not evident last week, they

seem almost unbelievable I guess... He said some of the symptoms I

was seeking help on could be caused by the medications, but it isn't

clear which ones (although I know the fatigue could be)...

>

> So, it appears after going through this for four years prior to

my diagnosis (May 04) I am now back to square one. He has taken me

off the hard core drugs and put me on Sulfasalazine as he says they

rarely treat PsA with the Biologics. I guess aggressive treatment is

not their philosophy, rather start from the beginning and work up.

>

> It has been my wish to try to get off the heavy duty medications

and this is one I have not tried before, so I am willing to try.

>

> Has anyone else been told their joints are too flexible and this

could be causing their problems?

>

February 18, 2008

,

I went to Stanford after I was diagnosed to confirm medication, etc. I saw

Dr. Utz, and he is fantastic. My husband went in with me, and when the Dr.

came in he said Hi I am " PJ " and he spent almost an hour with us answering all

our questions, especially making sure that my husband was involved too. I

was impressed with the professional manner of all I encountered. That was 5

years ago, occasionally he will call me to check up, and I can E-mail him. My

Internist also checks with him about me. But I understand that you have to

be accepted to go there, and the Dr. here in Stockton had to fax all of my

records to him. Then Stanford called me to set up times and things. I think

it cost my insurance approximately $1,000.00, but I am not sure now, or what

other programs they have.

If you have any other questions, you are very welcome to contact me directly

(209) 931-6017 or E-mail _DandCmayer@..._ (mailto:DandCmayer@...) .

Gentle Hugs & Prayers,

Carol M. in CA

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(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

February 18, 2008

,

I've not been to Stanford but went to UCLA. I had to fly cross country and it

was worth every

dollar.

>

> I'm thinking about going to stanford, paying out of pocket to get a

> second opinion, has anyone on here been treated at the Stanford in

> Northern Cali and if you have, any advice or opinions???

> Thanks,

>

February 19, 2008

Thank you for the info. I will request him, I talked to the receptionist at

stanford and as long as I have my medical records and money they are happy to

see me my insurance isn't covering it. but my dad is so that's a nice load

off my back. I'm going to try to get this going today.

Dandcmayer@... wrote: ,