Wellness

[I am still oxox]

I have been diagnosed with an immune deficiency and the treatment is infusions of Gammglobulin.

I saw a second immunologist in late September, agreeded with the diagnoiis and suggested some additional blood work which I decline, I have had enough with the testing.

Fast forward to the day before Thanksgiving and I get a call from my normal immunologist who I have seen 3 times since the second opinion.

She says I need you to see a Hematologist for more tests, I thought it was additional blood work, I was bullied into submitting to a bone marrow draw and the additional blood work. i was also told I needed a CT scan with contrast.

I walked in to the appointment knowing only of the blood work, I feel like I am being ramroded and bulled into submitting to these tests or I will not get my infusions.

I am seeing my normal immuno on Monday for the last time before she leaves for a 3 month maternity leave.

I am livid and want an explanation as to what happened and why I was not informed

I am not even sure if I have a leg to stand on Help please

thanks 

[NicksmomESQ]

  I wouldn’t have gone for the additional testing until I got a full & complete explanation as to why it was needed. Sometimes doctors overtest to cover themselves or to generate paying services in a patronage relationship with other providers.

  I’m not saying that’s true in your case but you should still have all the information & then decide for yourself.

[Laura14]

I find the best approach is every single person you talk to, explain that you want every part of their conversations communicated to you because you feel like you are getting lost in their system. 

I would start with your primary doctor to possibly make a note in the electronic medical record and go from there.  I had the same thing a few years ago and speaking up and deciding what I will and won't do in my own interest after 2 years of BS is pretty clear to all now.  

[tends2dogs]

Have you received the results of the bone marrow biopsy and additional labs?  I find it hard to believe that they would order up a bone marrow biopsy unless they suspected something.  If you have already been diagnosed with an immune deficiency and the protocol is gammaglobulin, then I doubt they would need the biopsy in order to receive the infusions.  I would go to that Monday appointment and ask for all the test results, what they were actually looking for, why was it so urgent that you couldn't be consulted beforehand......in other words, what is going on??

@I am still oxox I would say that you most certainly have a leg to stand on concerning this.  This is your body!  If there is something else going on, you need to be on top of it and have a say in everything that goes on.......going forward.  I hope nothing is seriously wrong and that you get satisfaction at your appointment. 

We are here for you.  Try to relax this weekend.  There really isn't anything you can do before Monday and worrying won't change a thing.  I know, easier said than done. 

[Misplaced Parisian]

@I am still oxox First thought that comes to mind is...does the clinic you use have a patient advocate?  If so, take your situation to them as this is precisely what they handle. At your appt Monday appt please make known your frustation, concerns, etc.  Hang in there.  I wish you all the best.

[meem120]

You need to sit down with the hematologist and have a long talk, If your own immunologist is on maternity leave.  Did you ask why the bone marrow test and cat scan. Doctors dont order those types of tests unless they are ruling out other diagonises.  I think the tests would give you peace of mind.  Your original diagnosis is nothing to fool around with. Its not a money maker for Drs to order these tests.  They dont make a cent.  If youre not satisfied they are taking good care of you go get a third opinion.  Its your health.

[RedTop]

I think your medical providers are following protocol with the next level of testing for treatment of your condition.    

You are not not being bullied, or ramrodded, and your infusions will not be withheld, but without a complete up to date medical record, that shows you are being closely monitored, your insurance will not continue paying for your infusions.   

[Janey2]

Totally agree with Nicsmom. I know for a fact some doctors overtest. This is how they make money. Do not be afraid to speak up for yourself. Only you know what is best for you.

[I am still oxox]

@meem120

She is starting leave in mid December and will be available via e mail while she is out.

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@meem120 wrote:

You need to sit down with the hematologist and have a long talk, If your own immunologist is on maternity leave.  Did you ask why the bone marrow test and cat scan. Doctors dont order those types of tests unless they are ruling out other diagonises.  I think the tests would give you peace of mind.  Your original diagnosis is nothing to fool around with. Its not a money maker for Drs to order these tests.  They dont make a cent.  If youre not satisfied they are taking good care of you go get a third opinion.  Its your health.

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[I am still oxox]

@RedTop

This is NOT the protocol call for CVID it is protocol for Lymphoma which suddenly a new diagnosis that I was not aware of what so ever.  Of course I am being bullied I was not given an option for the bone marrow test.

Protocol for CVID is checking IGG  levels in blood and checking vaccine responses

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@RedTop wrote:

I think your medical providers are following protocol with the next level of testing for treatment of your condition.    

You are not not being bullied, or ramrodded, and your infusions will not be withheld, but without a complete up to date medical record, that shows you are being closely monitored, your insurance will not continue paying for your infusions.   

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