Appt. with New Rheum. and Hand Specialist

[Guest guest]

Well, I guess it went okay. I guess I am never going to get what happened to me

5 years ago...diagnosed on sight and given aggressive drugs to help me. They

just don't

make them like that any more.

The Rheum. examined me (not enough I thought) and went over all my BW and X ray

and MRI reports. She believes I have some type of Arthritis, possibly related to

my

UC. I said, " So, you don't think I have RA? " , and she said, " Well, how can I say

that, I

have only seen you once? "

She wants X-rays done of my hips and sacroiliac joints and MORE BW and then said

she would see me in 6 weeks, sooner if something was extremely off. She said

that if

I needed a biologic that I would need a full Blood Work-up anyway.

My nightmare continues. I had a diagnosis of RA in 2003!!! If Humira helped me

for 4 years, who really cares what it is? No one cares (docs) that I can't work

and

that this has been dragging on. Like, I tell them I can't work, my unemployment

is running

out, I am the only breadwinner in our family, and they don't care, there is no

sense of

urgency with them!

She thought it couldn't hurt to see the hand specialist the next day (Thurs.)

but thought a biopsy of my nodules might be unusual.

So, I went and felt the consultation was pretty much a complete waste of time. I

went through all the trouble to get him all my MRI's, X-rays, and reports as

requested and it was obvious he never looked at them. Nor did he read my chart.

He comes in and says, " So you're a healthy woman, what are you here for? " I

said, " I am not a healthy woman " , and then he starts to read my chart!

Basically he said that he felt he would only biopsy if no doctor had clue what

was wrong with me and that I should get a second opinion. When I told him I had

one

yesterday he said he knew who she was and that she was good. He said that the

likelihood

of cancer was very small and he agreed my hands definitely looked deformed. My

other

doctors don't seem to think that is a big deal!

This was really weird, I don't know if he was testing me or what but when I told

him that I was here to have my nodules examined and possibly biopsied he said,

" What are

nodules? " I started to explain, haltingly, b/c I was in shock and then he said,

" Wait, let

me save you the trouble, I'll read your MRI report. "

I kid you not about this visit! I guess I am going to wind up going to the

Rheumatologist I saw yesterday as I obviously have to pick one, take her BW and

X-rays

and wait for 6 weeks to see her again.

After this appt. today, I got in bed, ate half a pint of Ben and Jerry's and

took a nap.

Meanwhile, my hands go untreated...

Thanks for reading,

[Guest guest]

Dear - This doctor is not meeting your needs. What you need obviously is to back track, get your old RD's Records along with your last Humira Injection date and with the pharmacy that dispensed it. RA has no cure so obviously being in pain and experiencing nodules you are in active disease. You need to find another RD. I got the same treatment and was told the same things and was told the same " oh you might have arthritis? " generic answer. You want an RD who will focus on you and simply continue the treatment for your disease. You need to apply for disability as well. The records from your old RD are proof enough to send to a lawyer. Have your old RD's notes translated by someone who can decipher them, and then copy the last blood work results he gave you along with his most current notes. Send them to other RD's. The best reside at teaching hospitals. Google Rheumatologists in (your state) and a list will pop up. Find out where they are and what hospital if any they are associated with. Send a cover letter asking for a consult. If your RA factor is positive and your xrays show damage then the evidence is undeniable. DO believe there are GEMS out there in the rheumatology field. I have known 5 of the almost 30 I have known in my 15 years with this disease. I currently have an amazing RD. He is outstanding and I get the highest level of care. You will find alot of rotten turnips in the garden but every now and then you will find a pristine perfect specimen. By your new RD's answers he/she sounds as so many doctors do these days, overwhelmed with patients. Short tempered and no help at all. The good ones have assistants that make the patient load easier to manage. My RD gives me 15 minutes including an exam. He listens and talks to me as an equal and educates me on new information when he comes across it. He teaches, has done research and is actively participating in symposiums to keep up

with the latest information. Let your old test results do the talking. Dont let a new doctor find out whats wrong with you. You already know. Tell them what you want. Dont let them tell you. You need some immediate relief. If possible, get your PCP or RD to prescribe high dose augmentin. It staved off flares while I was on it and it might just give you some relief for the time being. I know time is running out for you. If there is anything I can do to help, please let me know. Yours, Deborah

On Mon, Jun 16, 2008 at 1:46 PM, <catdelouise@...> wrote:

Well, I guess it went okay. I guess I am never going to get what happened to me5 years ago...diagnosed on sight and given aggressive drugs to help me. They just don'tmake them like that any more.The Rheum. examined me (not enough I thought) and went over all my BW and X ray

and MRI reports. She believes I have some type of Arthritis, possibly related to myUC. I said, " So, you don't think I have RA? " , and she said, " Well, how can I say that, Ihave only seen you once? "

She wants X-rays done of my hips and sacroiliac joints and MORE BW and then saidshe would see me in 6 weeks, sooner if something was extremely off. She said that ifI needed a biologic that I would need a full Blood Work-up anyway.

My nightmare continues. I had a diagnosis of RA in 2003!!! If Humira helped mefor 4 years, who really cares what it is? No one cares (docs) that I can't work andthat this has been dragging on. Like, I tell them I can't work, my unemployment is running

out, I am the only breadwinner in our family, and they don't care, there is no sense ofurgency with them!She thought it couldn't hurt to see the hand specialist the next day (Thurs.)but thought a biopsy of my nodules might be unusual.

So, I went and felt the consultation was pretty much a complete waste of time. Iwent through all the trouble to get him all my MRI's, X-rays, and reports asrequested and it was obvious he never looked at them. Nor did he read my chart.

He comes in and says, " So you're a healthy woman, what are you here for? " Isaid, " I am not a healthy woman " , and then he starts to read my chart!Basically he said that he felt he would only biopsy if no doctor had clue what

was wrong with me and that I should get a second opinion. When I told him I had oneyesterday he said he knew who she was and that she was good. He said that the likelihood of cancer was very small and he agreed my hands definitely looked deformed. My other

doctors don't seem to think that is a big deal!This was really weird, I don't know if he was testing me or what but when I toldhim that I was here to have my nodules examined and possibly biopsied he said, " What are

nodules? " I started to explain, haltingly, b/c I was in shock and then he said, " Wait, letme save you the trouble, I'll read your MRI report. " I kid you not about this visit! I guess I am going to wind up going to the

Rheumatologist I saw yesterday as I obviously have to pick one, take her BW and X-rays and wait for 6 weeks to see her again.After this appt. today, I got in bed, ate half a pint of Ben and Jerry's and

took a nap.Meanwhile, my hands go untreated...Thanks for reading,