neurologist's staff called you back, but a one week wait is really not as professional as I would have liked.
This is gonna be long: When I had my problems, I called every other day until I got an answer - if not from my neuro, from another in that practice. I called everyone! The hospital was squirrelley and evasive in their answers...So, I called the [presumed] manufacturer of the brand of IVIG I was SUPPOSED to be getting. THEY WERE SLOW taking a week! But I kept calling, and calling...Then, since I wasn't getting anywhere with the neuro or the mfr., I called the FDA and filed over the phone an 'adverse reaction report' At that time the FDA people were really nice and have been on other occasions about s/e's of new meds added for other issues.
Seems like the DAY after the call to the FDA I got a call from the IVIG Mfr...who I had to relay all the 'things' that happened again to [this takes about 30-45 minutes on the phone BTW]...Shortly after that, I saw my neuro [who'd probably gotten news from some 'grapevine'] and after my meeting with him my 'REACTION' was upgraded to a 'SEVERE REACTION'! ONce I found that out - I reported my events to the State Medical Licensing Board [another 45 minutes on the phone] - I'm thinking that between the FDA, Mfr, and State Boards...well, that infusion clinic was CLOSED [they only close for very MAJOR hodays] was closed for several days ...nurses told me later that it was for 'training'...They also kept dropping 'hints' to me after all this that 'they'd admitted 2-5 patients with reactions since I was last there, EACH TIME . Needless to say, I asked for and received a 'refund/credit' on a subsequent bill [paid for by my insurance] for the half day's dose they dumped in the trash when it was decided to disconnect me early...and just let me go drive home!
I am very grateful to the internet, folks here and other sites that gave me the knowledge to KNOW that something was more than seriously wrong on that infusion day! It probably was either an anaphalyptic[SP?] or cardiac reaction...had the nurses KNOWN to draw blood at the time of the 'reaction' there are tests that could have been done to track that...seeing the neuro 2 weeks later ...well too late then to determine which.
YES as Dr Fred said he DID dodge a bullet! I was checking the boards about 6 times a day with worry! I am grateful tho he didn't have the kind of headache I'd had with my reaction! Yeah there's the PN pain which usually is kicked down many notches with infusions, but this was like a week-long migraine from heck! I appreciate and truly feel for migraine sufferers! Take a vise and tighten it all around my skull till the brains pop out! I've a few 'grey cells' left tho..
Spoke about your 'bag' incident and about what that nurse did to MY infusion nurse today...and her first question was "IS THIS PERSON LICENSED?" And that YOU should have REFUSED infusion! IN NO UNCERTAIN TERMS!. Well, now you got it from a nurse who's done nothing but infusions for over a decade! For all kinds of things...she hates to do kids tho - says it hurts her to do them more than the kids hurt. Bless her!
Soo, keep records of who you've talked to about what and the dates and times...and all. Press your neuro to get you a COMPETENT service?
Hugs Melody...AND ALAN! I'm glad you are here to relay new episodes of this story! Next time you see Dr Fred, give him a hug from me as well...He sounds like he's one of the good guys! - j