Just had first appt with Dr. Kaufman

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fireflymd

Senior Member
Messages
110
Learner1 said:
Yes, I live about 700 miles away, so I was able to spend a long day traveling to see him for a midday appointment both times. After that, I've been able to have phone appointments.

Though he was an out of network doctor, all the tests he ran except the CellTrend (which was done in Germany) were covered by my insurance. They went to LabCorp and Quest and Dr K was sensitive to cost. He also battled my insurance to get me IVIG.
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Do you know what diagnosis he used to fight for your IVIG?

I was told this would require a demonstration of poor immune function.
 
Learner1

Learner1

Senior Member
Messages
6,311
Location
Pacific Northwest
He sees patients twice in person, and then subsequent appointments can be by telephone. It makes sensed that he can do a physical exam and get to know you in person, especially with such a complex disease.

I had to fly to see him, but it was worthwhile. He has arranged nursing care for me in a different state and emails me lab requisition.
 
S

sue1234

Messages
75
Learner1 said:
He sees patients twice in person, and then subsequent appointments can be by telephone. It makes sensed that he can do a physical exam and get to know you in person, especially with such a complex disease.

I had to fly to see him, but it was worthwhile. He has arranged nursing care for me in a different state and emails me lab requisition.
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Thank you for that information!
 
bspg

bspg

Plant Queen
Messages
547
Location
USA
@Gingergrrl I am alive. I've been wanting to post an update but just too exhausted. Thank you for thinking of me! :heart:

Long story short: I'm still seeing Dr. K. I've had improvement in many symptoms but am still not very functional overall due to extreme exhaustion. Seeing an immunologist tomorrow about early sjogrens antibodies.

I hope you all are doing okay! I've only been logging in here and there to search for info, so I have no idea what is going on with everyone. I hope to catch up on everything eventually! :heart:
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
bspg said:
@Gingergrrl I am alive. I've been wanting to post an update but just too exhausted. Thank you for thinking of me! :heart:
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Yay, it's great to hear from you @bspg and I was worried about you!

bspg said:
Long story short: I'm still seeing Dr. K. I've had improvement in many symptoms but am still not very functional overall due to extreme exhaustion. Seeing an immunologist tomorrow about early sjogrens antibodies.
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I'm glad you are having some improvements and I hope your appt went well with the immunologist.

bspg said:
I hope you all are doing okay! I've only been logging in here and there to search for info, so I have no idea what is going on with everyone. I hope to catch up on everything eventually! :heart:
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I am actually doing very well (much better than when I last talked to you via PM). I haven't used wheelchair in 3-4 months (it's now folded up in my closet) and I can walk and drive again! I can also walk my dog, who finally made a solid recovery from her back surgery. I will be starting my own PT on Sat to try to strengthen my muscles and reduce muscle pain from all of the new activity I am able to do. I am basically in "remission" (for lack of a better word) from my treatments but we do not know if it is temporary or permanent. I'm completely done with IVIG but will still do maintenance Rituximab infusions. We will catch up some day in the future :hug::heart:
 
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