RA or not

[Guest guest]

Its been quite a while since I wrote. My rheummy is leaving the clinic and

moving on to another city. So I will no longer have a rheummy for the next

1-2 yrs until the clinic find a new one to hire.

He and I have not seen eye to eye about a lot of things concerning my care.

I had weight loss surgery in May 2004 and have been doing well. So well

that I took myself off all meds. He was not happy with this and the fact that

he never listerns I stopped wasting my time and money going to see him.

During the same time my internist moved away also. This is the hard part about

living in a community not in one of the major cities in Texas.

So for the first three months of this year I was sick with viral illnesses

as well as the flu. this sent me into some sort of flare. I recently saw my

rheummy and he decided that Enbrel alone was not to put me back on....but I

refused to take Methotrexate ever again due to the many side effects I had.

So he decided that he wanted me on Humira. I am still awaiting patient

assistance approval to see if I can get it covered. I am not thrilled about

even

starting this drug. Then he gave me a RX for 5mg prednisone pills and told me

to start them right away.

I also asked about ANA and RF test. I wanted them done since its been quite

a while. He told me no, he does not repeat the test once you have been

diagnosed. I told him I can find no record of these tests being done in my

chart. He still said no. This alone has made me even more suspicious of my

diagnosis. I discovered that the first rheummy that I went to that was in my

clinic kept sub-charts for all his patients..and when he left the clinic he

took

those charts with him...so there went all my original labs and notes. No clue

where he is now.

He also gave me a shot of 40mg of steroid. Which made me so sick with

stomach pain for three days after the shot. I made numerous calls to the nurse

and she basically told me that there is no way the steroid injection can cause

GI distress because I did not take it orally. What a stupid nurse.

Hmm....if that was the case then why do docs order torodol IV to only be given

for 7

days and then stopped...hmmm...because of the risk of GI distress and ulcers.

Well, I called the pharmacy and the was told by the pharmacist that indeed

the injections can cause GI distress and it takes about 3-4 days for the drug

to get completely out your system. IN the meantime there was really nothing

that can be done. I could try some OTC acid reducing meds such as Tagament,

Prilosec or Maalox. I finally broke down and took a Nexium left from my

post-op recovery from surgery. It worked like charm and finally after four

days

the stomach pain and burning went away. The prednisone shot did help

some..but not at the risk of causing problems with my stomach.

I finally found a new internist and saw him on Friday. He was quite

surprised by the care I had been receiving and understood why I do not trust my

rheummy. He did a good exam and stated that we need to find out what is

causing

you the most trouble. It could be that your RA still is in remission and your

symptoms are mostly Fibromyalgia. He looked through my chart and again

discovered exactly what I had told him about the lack of medical documentation

of confirmation of diagnosis. He ordered a full blood panel which I had just

had done earlier that week...but its ok...I'd like to see if the prednisone

made any difference in my labs..as well as full auto-immune panel.

Whooo....hooo....so finally some answers!!!

I let him know I was not filling any prescriptions or starting any RA

related meds until I had some answers. He agreed that was reasonable and a few

weeks really would not make much of difference considering I had not been on

any

meds in a year! He also addressed pain and sleep issues which my rheummy

consistently ignores. So I will be trying Elivil, and Ambian for sleep, plus

he gave me darvocet for pain. I would have been perfectly fine with

Ultam...but maybe he did not write that because if my sensitive stomach.

I will be seeing a new rheummy next month. He has been here for quite a

number of years but did not accept my insurance. I found he now is accepting my

insurance. I set up a new patient appt with him. The nurse was also shocked

to find out why I was so frustrated with my old rheummy. So they will be

doing a full work-up as if I had never been diagnosed. Which I think all

patients should get when changing docs. Its ridiculous to just continue on

when

you have so may parts of the Dx missing. If this diagnosis is wrong and I do

not have RA I will be suing my old rheummy for giving me all these meds with

there horrible side effects and risks.

Toni in Texas

[Guest guest]

Toni, I always get copies on any blood work that is done on me. I like

to have my own record, and I like to know what is going on in my body.

Hope you can finally get a diagnosis when you go to the new rheumy.

Sue

On Monday, April 18, 2005, at 10:18 AM, aclavern33@... wrote:

>

> I also asked about ANA and RF test. I wanted them done since its been

> quite

> a while. He told me no, he does not repeat the test once you have

> been

> diagnosed. I told him I can find no record of these tests being done

> in my

> chart. He still said no. This alone has made me even more

> suspicious of my

> diagnosis. I discovered that the first rheummy that I went to that

> was in my

> clinic kept sub-charts for all his patients..and when he left the

> clinic he took

> those charts with him...so there went all my original labs and notes.

> No clue

> where he is now.

[Guest guest]

Toni, I always get copies on any blood work that is done on me. I like

to have my own record, and I like to know what is going on in my body.

Hope you can finally get a diagnosis when you go to the new rheumy.

Sue

On Monday, April 18, 2005, at 10:18 AM, aclavern33@... wrote:

>

> I also asked about ANA and RF test. I wanted them done since its been

> quite

> a while. He told me no, he does not repeat the test once you have

> been

> diagnosed. I told him I can find no record of these tests being done

> in my

> chart. He still said no. This alone has made me even more

> suspicious of my

> diagnosis. I discovered that the first rheummy that I went to that

> was in my

> clinic kept sub-charts for all his patients..and when he left the

> clinic he took

> those charts with him...so there went all my original labs and notes.

> No clue

> where he is now.