hello all…here i go griping again ;)
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February 26, 2007 at 9:00 pm
Is good to be back at this forum…i haven’t been here for quite some time. This site wasn’t working for awhile No?
I have been reading some of your posts and noticed the discussions on different peoples opinions of the severity of their CIDP…I was suprised as all get out when my “former” neurologist told me he thought my case was ‘mild’…
When i first went to him and was diagnosed i couldn’t even feed myself or use the restroom without help. That didn’t seem mild to me.
However…with the IVIG i am (although nowhere near as strong) almost normal concerning ADL’s, except for an ever present fatigue. I recieve it for 2 days every 3 months.
What i wanted to gripe about is when i called his clinic today to schedule an appt. with him so he could order the next IVIG, they told me he no longer worked there…he had gone to a different clinic..way up in north KC.
He didn’t give me any referral for a new neurologist…he didn’t tell me that he was the only neurologist at the Headache and Pain Center (where i saw him at) and now they don’t know when they will be getting a new neurologist.
GRRR!!! This comes at a time when my parents are going on vacation..i needed to get it done before they went because while they are gone i am supposed to be caring for my grandmother…we all live together:rolleyes:
There is more to fuss about but my hands can’t take the typing anymore…so i will save it for another day…
Thanks for considering my ranting…..see ya -
February 26, 2007 at 9:10 pm
Could your Family Doctor order the I V I G for you until you can locate another neuro? It’s worth a try.
Mary Ann -
February 27, 2007 at 2:30 pm
Hi Kitti,
I don’t have any answers, but wanted to send you a big ****{HUG}}}. I am just south of you, but I don’t think I could make the road trip. I’m 10 years post GBS and for the past couple of years been wondering what’s up with my system. MY pcp doc. is going to get me in with a new neuro (old one wasn’t on new ins.) and I really would like new tests done. Actually, I really wish I could just be all better by tomorrow at Noon. How does that sound with you? Oops, excuse me I slipped into a moment of denial and unrealistic expectations. Hopefully, I got your mind off your situation for just a second while you are wondering what is up with this crazy woman 😀
At least we are always here to listen and sympathize with you. Another ******{hug}}}}.
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February 27, 2007 at 3:14 pm
Hang in there! It seems a lot of people on this forum have trouble with finding the right neuro – I got lucky right off the get-go. You have a perfectly good reason to be upset – but I find that practicing medicine today is more business than health “care”. The reason he didn’t give you a referral to a new neuro may be because his office wouldn’t let him. I worked for doctors for years and when an attending left the practice, we always sent out letters to the patients and introduced the new attending. But since they don’t have another neuro there, it would be courteous to let you know of other neuros in your area. Somebody dropped the ball! Vent all you want – we’ve all been through those grit-your-teeth moments! Good luck and good health.
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February 27, 2007 at 5:18 pm
I was dx in July of ’05. Immediately afterwards the whole neuro dept. quit. Before he could order my first treatment. My regular md ordered the first one while I searched for a new doc. One of the most frustrating things for me is not really knowing if I have a good neuro. What can you do? I don’t want to bounce from one to another. I want to have history with a doc so he will know my body and what to expect. Oops I think I took your place in griping!! LOL
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February 27, 2007 at 8:20 pm
Thank you for hugs, and all the advice..i hadn’t even considered asking my regular doc if he could order the IVIG, thank you for the suggestion! I guess i was so fritzed up over finding a new neurologist i wasn’t even thinking of other solutions..:eek: I did ask my reg. doc if he could refer me..but i haven’t got a call back about that yet. Awwz well…i am feeling a bit better today, but i know i still need the ‘people juice’ before too long. I usually call IVIG ‘people juice’ when i am speaking about it to my friends…it comes from an episode of aqua teen hunger force…yes i do watch cartoons sometimes:o …where this diaper wearing rapster monster spider is trying to launch an evil pyramid scheme:D lol!…Then again, it is a strangely different kind of humor..
Be well everyone and i will speak to you all again soon -
March 6, 2007 at 3:50 pm
Ok…so i am quickly loosing any sense of humor which i might have had. Since i last wrote i did check with my family doc…who after a week of calling finally contacted me, and has decided that he is not comfortable ordering the IVIG…he did refer me to a neurologist…who doesn’t accept medicaid..so that was no good. Then i called my specialist, whom i have only seen twice. He proved to be more elusive than my family doc. but today had his nurse contact me..and admittedly after apologizing for the delay..informed me that their IVIG ‘gal’ was home with a sick husband. She is supposed to call me tomorrow. I decided to track down my former neuro. who had left for a new job at NKC hospital…i wasn’t able to talk to him, but did leave a message about having such a hard time finding someone to do the IVIG. The lady i spoke with told me that they didn’t accept medicaid..and that there was a waiting list for IVIG anyway…as if i would go to NKC hospital in the first place!!! I don’t play around in North Kansas city…so i am a bit of a..um..geographical snob.. i guess. So i just get this call back from NKC..and it is a Stephanie..who seems like she knows what is going on. She told me that the Headache and Pain center was obligated to schedule my treatments for up to 30 days after Goodman left…even if they don’t have another neurologist there. She said she would call them if i wanted and give em what for…so i said sure, go for it…and they are supposed to be contacting me tomorrow. THANK YOU Steph…whew..i was getting very frustrated and irritated. I hope they do call me.
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