Venting don’t these drs understand??
-
-
March 16, 2007 at 6:56 am
😡 Again I;m confused. My daughter was dx 2/07 with cidp and we went to the MDA clinic to see a neuro whom seems to be nice and know what she is doing (I think being new to cidp) the clinic was to get with Monica’s family dr to make sure they knew what was going on and to have the family dr set up the spinal, blood work,pt and to keep her meds filled. Once again we heard nothing. Went back to clinic 3-7-07 and neuro asked if the spinal, blood work and pt had been set up? We explained that we had called family dr on numberous occasions but were still waiting. Therefore neuro re-precribed everything so family dr can get the ball rolling. Well all that has been done is the clinic set up Monica’s next two IvIg’s and nothing about the other tests. What the H———– is going on? Family dr as of thurs.3-15 still hasn’t received anything from clinic and also told us this is the last refill of prendisone Monica can get till they get paper work from clinic. I am so upset because don’t these people give a rats patooty about Monica? I think not. I also think Monica is relapsing because she is having really bad leg pain with the numbness, burning feeling and is extremely tired. Today we will be calling both offices again and I pray that we will get somewhere. Thanks for listening it helps knowing I have all of you to make it a bit easier to get thru this. God Bless you all!
-
March 16, 2007 at 10:59 am
Dawn, that’s pretty bad that you have to follow up, they are professionals and should be on top of things. I would go down there and get it straightened out in person, don’t leave until everything is set up and you know who is going to handle what.
Jerimy
-
March 16, 2007 at 3:17 pm
Hello Just wanted to let you know that we finally got our appts scheduled.We go for the spinal tap 3/27/07 and IvIg’s on the 3/28 & 3/29 and the blood work on Monday. But trust me the next time at clinic we won’t be leaving until all the appts are set up. Let alone I will be letting them know how crazy and unprofessional I feel both offices have been about getting all these appts set up. Now we just wait. Does anyone know how long it usually takes to get these results back? Our next appt to the clinic isn’t until May. Hanging in there and being strong for my daughter.
-
March 16, 2007 at 4:25 pm
Dawn that is absurd waiting that long for the tests. I was paralized within 48 hours after first signs. Your doctors are …….. I guess it’s really not my call but I would be on their @$$.
Tim -
March 16, 2007 at 4:48 pm
Dawn,
I’m so sorry to hear that you have been having such a bad time getting the attention your daughter needs. It’s unfortunate that in additions to caring for your daughter (your primary job that nobody else can do like you can), that you must follow up and ride herd on the doctors and staff.
If you already have a dx of CIDP, I”m not sure I understand why they want to do a spinal tap now…. it’s primarily a diagnostic tool.
Also, why the long wait for IVIG? Have you questioned the long wait? It sounds like it’s time to raise some cane.
Best wishes to you and your daughter,
Suzanne
-
March 16, 2007 at 4:50 pm
Dawn,
I’m so sorry to hear that you have been having such a bad time getting the attention your daughter needs. It’s unfortunate that in additions to caring for your daughter (your primary job that nobody else can do like you can), that you must follow up and ride herd on the doctors and staff.
If you already have a dx of CIDP, I”m not sure I understand why they want to do a spinal tap now…. it’s primarily a diagnostic tool.
Also, why the long wait for IVIG? Have you questioned the long wait? It sounds like it’s time to pitch a fit. If you aren’t sure how to do that, please let me know and I’ll give you some ideas (I’ve gotten pretty good at it)!;)
Best wishes to you and your daughter,
Suzanne
-
March 16, 2007 at 5:12 pm
Not sure either why they want the spinal, she was dx after she had her emg.She has already had 2 IvIg’s and now this will be her second time at it. Yet by the time she has these next two infusions it will have been a little over 6 weeks. Oh and trust me I can B—- with the best of them. But thanks and if I don’t do a good enough job Suzanne I’ll get in touch. Thanks for the input from all.
-
March 17, 2007 at 2:12 pm
We switched Emi’s neuro’s a few months ago to a dr that works out of an MDA clinic in Farmington Hills, MI. We had a HORRIBLE time getting calls back from the clinic. We switched back to our old neuro because I tried for 3 weeks to get the scheduling lady to call me back to set up an appointment for Emily. I finally reached my breaking point when I left 5 messages for her & never received a call back.
I’m not sure if it’s all MDA clinics but the one that we went to wasn’t as efficient as I had hoped it would be.
The ONLY way that I could ever get anything done through the MDA was when Emily had an appointment & I told her neurologist directly what I needed.
Good luck.
Kelly
-
