my soon to be ex-rhumey - need to vent!

[twilite]

I went to my rheumy last Thursday and had to wait in the exam room for 1/2 hour for him to come in.  the exam chair e has is very uncomfortable, I cannot sit upright for too long due to abdominal bloating and discomfort.

suddenly my eyes became very sensitive to the light and daylight coming in the window, I asked my mom to turn off the office light and put on my sunglasses and put my straw hat over my face to block the light.

so, in he comes and he turns on the light and he proceeds to tell me that my test results were normal, well, I was in pain and asked him to turn off the lights because it hurt my eyes.

he of course wanted to know how long my eyes have been bothering me, I said it has happened around three times during the last month.  so he shined a light in my eyes and said I needed to go from his office to my eye Dr.

I had a list of issues and some questions that I prepared over the last month to ask him.  he said that he could not help me because my test results were normal.  it still did not register with me that he was saying I did not have SJS...

so I asked him if he would listen to me, he said ok, but you need to see the eye Dr right away.

well I told him about my memory problems, and confusion when trying to concentrate and remember things, bladder problems, tremors, numbness in my hand and arm, swelling of my knees... and he said he would refer me to  a urologist and  neurologist - dreaded img testing.

I asked if he tested me for vitamin d deficiency , he said no, your tests re normal, there is noting I can do for you - see the urologist and neurologist.

then I said I have  few more questions, and he was nasty, he stood there and said ok go ahead and ask.  I looked at the list and was really confused at this point, so, I looked and him and I said never mind.

I asked what do you mean my test results are normal, he said I don't have SJS and I asked how did the results show SJS last month and a second test show negative?

he said it happens.  so I asked what's wrong with me and he said prob your thyroid,  I left in confusion


mom and I left for the eye Dr.  after 2 hour exam dx with possible Uveitis and put on prednisone drops and homotrop for photosensitivity.

went to gp to request addl testing because rheumy did not know what was wrong with me.  he scheduled a head MRI and a gall bladder ultrasound this week.  also got perscription for handicap parking.

I sat up all night comparing the blood test results from my GP and the rheumy.  finally figured it out the rheumy did not run addl SJS tests - he just entered my GP blood test results in his computer and forgot to enter the SJS results so that it registered negative for SJS.

I called them the next day and after 3 phone conversations - got them to change the dx back to SJS and asked for the Dr to call me on Monday so that I could finish addressing concerns on  my  list.

my ankles, knees, wrist, and thighs were swollen, so I went to the ER last night and they said it is  a reaction to prednisone - I am on 20 mg and 200 mg of plaq and 50 mg of synthroid, prednisone eye drops, and xalatan for glaucoma.


went to see rheumy today - he is not happy with me because I asked him to reduce my prednisone and he said it is not a reaction to prednisone the ER Dr is wrong and he wanted to give me  cortisone shot to boost the prednisne...  seemed like he was ego tripping...

he said the eye Dr dx was possible Uveitis, what dose that mean?  why would he ask me that?   then he said something about my lupus dx I asked, what he meant, I don't have lupus - the panel that my GP ran came back neg...  he then went on to say that the eye Dr test for dry would confirm sjogrens dx...  this is the same Dr who dx me with SJS from my gp's SJS blood test results.  Now, I really think he is trying to power play me...  he wants to see me in 8 weeks...

I refused the shot... I am scared of this stuff, I have bladder and kidney issues and abdomen has been swollen for two months.  I am not willing to be his experiment.

the knee leg swelling has increased and I can hardly walk.  they are kinda red - swelling going from the front to back of knee.  I am experiencing some pain/discomfort in my upper inner left thigh and pins and needles in my feet.

I see my gp tomorrow at 4 pm


twilite

[Joe S.]

OMG - Find some one else, QUICK!

[Debora]

I agree with Joe!

Take Care
Debora

[twilite]

ty joe and debora

[downrabbithole]

Good grief! It sounds like this man has a terrible god complex. Grr, it makes me angry that people are treated this way. As was said before, see someone else...ASAP!!! 

[irish]

twillight, I would find myself a new rheumatologist or immunologist who likes to deal with autoimmune diseases. You also need to see neurologist and I would ask your GP who seems to be paying more attention to you, to refer you to one.

The uveitis is of great significance and importance and needs to be treated well. At least your rheumy got you to the right place on that. Uveitis can be the first symptom or sign of autoimmune disease. It is not common to have swelling from prednisone, but I would guess that anything is possible. It is also possible that a differenct brand of prednisone or type of cortisone product may work better. Check with your GP on this and also check with you eye doc as you need to be on steroids to recover from this bad attack on your eye.

Please continue to be patient as we all know what a run around we can get from docs.We all have to keep track of our lab tests etc. I have gotten so I ask to have most of the copies of appointments sent to me and then I make a copy to take with me when I see another doc. This way I am sure that everyone is up to date. I sure get sick and tired of doing this though. It takes so darn much energy when one is sick and especially when our brains tend to get lazy on us.

Also, some docs just don't get it that a person can have negative blood and still have sjogrens. Also, if you have positive blood work and then it goes negative you still have sjogrens. Many people have blood that will go back and forth between negative and positive depending on the day. If you test positive you have it!!!! I was ill for much of my adult life(am 65 now) and my first ANA to be positive was in 2005. Good luck Irish

[twilite]

Hi Irish - thanks for the advice...

I am seeing a neurologist on 6/23

eye doc put me on steroid drops, so maybe the swelling is from the plaq...

"It takes so darn much energy when one is sick and especially when our brains tend to get lazy on us"  - yes you are right, I try to be brave, but I did have breakdown today....

"if you have positive blood work and then it goes negative you still have sjogrens."

I never had a negative blood test, the rheumy did no run one, he simply forgot yo enter the blood test info into his "paperless" database and they throw away the hard copies that I gave to them.  so when he prints out info about me - he assumed that my tests were negative.  he simply did not remember me from my appt last month when he read the test results during the exam and he at that time based on the test results and exam dx me with SJS.

thanks again Irish

twilite

[Patze]

Hi Twilite,

Wow, did I just say WOW?   What the heck is wrong with that doctor?  Dang, and I thought that the rheumy I see was a pain to deal with.  And I agree with the others, make like a banana and split the heck away from this turkey (I know, I'm stuck in the way back machine this morning).

Your first order of the day, please see if your GP will recommend a rheumy; are you near a medical school by any chance?  Or maybe a major medical center?  I ask because often they will have the doctors that are cutting edge or at least will try to help you - this guy, even I'm at a loss for words!

I'm glad that your eye doctor seems to be on the ball and hopefully your eyes will start to feel better soon.

Take care and keep us updated, okay?

Patze

[Skylar]

Unbelievable - yes, time for a new rheumy ASAP.

Skylar