asked Dr to up the IVIG and he said NO
AnonymousApril 21, 2009 at 8:23 am
He even said, “absolutely not”.
Yesterday was a good day…until I got home and called the dr. I asked him two things. First, I asked to increase my IVIG. I am getting 40g every two weeks…was getting it once a month. I told him that I feel ok with everything but the fact that I struggle more to walk. I asked if we could increase a little. I didnt ask for a loading dose or anything…just a little more.
NO. He said that the risks outweigh the reasoning or some nonsense. He also said that if I’m getting too much fluid or anything, we can go back to once per month. Then he said, “we have two options, keeping it like it is, going back to once per month, or do none at all”. Yeah, like none at all is an option ? 😮
I guess maybe b/c I’ve only been doing the every two weeks for a few mos now. I ration that he’s trying to see how this goes.
He refused loading doses when I went back to him after the second opinion. The second opinion dr had me on 20g, once per mo. Nice huh.
I asked about a loading dose when I returned to him, also doing much worse, I’ll add…and he said no…that b/c I”d been getting ivig all along, albeit a small dose, it wouldnt do any good. And, my reactions. I get a rash and ONCE I got the mennigitis headache. I have a new nurse now and she’d never let that happen…she infuses nice and slow.
I’m so ticked !
The last time he did an EMG he said I was in active disease and we have to hope and wait for it to “burn itself out”. Ok, I get that. Then, I saw him again and he said that I seemed unchanged…that’s when I asked to increase my dose and go every three weeks…he said, “we’ll do every two”…I thought then the my dose would be increased, NOT divided.
I told my nurse and myself, I’d give the ev two weeks a few times and then call. Yeah, silly me.
Then I asked about sub-q. He said with CIDP, we are trying to overload the system with good antibodies and that sub-q is for people with immune deficiancies not for CIDP. NO to that. And, that’s ok…I’m not upset by this.
I was curious b/c it HAS been approved for CIDP. However, by this time, I was unable to argue anything.
I was choking on tears.
I asked then, “so what do I do…just wait and see what happens? Is there anything I can take supplement wise, what ?”
He said, “well, see how your stamina holds out on vacation ” and to take calcium and vit D and a mulitvitamin.
Then he told me to have a nice trip. Yeah, right…right onto my face, right ?
So, I hung up…and completely fell apart. I sobbed and sobbed. I feel like he has told me this is it…there will be no increase and lets just wait till ya cant walk at all and then maybe I’ll do something.
I told him I am having more probs with walking…do you think he wanted to see me ? NO.
I’m not crying today…I’m not giving him the satisfaction. I am the one that cant walk, I am the one facing a wheelchair someday…NOT HIM.
I really feel there is a change in him since I went for that second opinion and didnt tell him until I went back. I dont know what the deal is…he used to be so aggressive.
I called my pain mgnt dr and asked the nurse to please ask him if he knows any good nueros around here. I dont even know if she could understand all that I said…I was crying and not able to pull it together…I feel pretty stupid today. She was going to talk to him and call me. I didnt hear back but it was late in the day…he is very good to me and I have hope that he’ll know somewhere else I can go. I’ve got to keep trying to find a Dr like many of you have…I’ve GOT to.
For now, I’ll pick up the 20 pound bags under my eyes, do my treatments every two weeks and try my best not to give up hope.
I have to be honest tho, I feel let down and more scared than I’ve ever been.
AnonymousApril 21, 2009 at 11:29 am
I just read your post and I could just cry my eyes out for you. My little girl has only been able to walk on and off for 4 1/2 months and I am scared, too. I just pray like crazy and crazy. God promises that he will keep us under his wing. Read Psalm 91 and let it just comfort you. Tell him you trust him and that you are depending on HIM to take care of you better than any old doctor!
AnonymousApril 21, 2009 at 12:24 pm
Oh Stacey, I am so so sorry. I feel your pain as I sit here and cry for you. You have come such a long long way in advocating for yourself and I just don’t want this to stop you from doing that. I was surfing on the web the other day looking for local support groups for neuropathy and found a site that helps people locate neurologists specializing in peripheral neuropathies.
I beleive if you plug in National Neuropathy Association, you will see what I am talking about. Don’t stop until you get what you need. I hope your pain management doc proves to be a good advocate for you. I just recently had to swithch my primary physician who I have been with for 15 years because she didn’t like that I was consulting with others for my CIDP. It was a tough decision but I had to find someone who’s ego could withstand my need to have input from specialists. I am so glad I did it as I have found a more sensitive doctor. Please hang in there Stacey. PM me if you need anything.
All my best,
AnonymousApril 21, 2009 at 12:48 pm
Yeah, I hate dr’s. My dr totally took me off IVIg as he said that since I wasn’t improving fast enough therefore it wasn’t working. Now I am hanging out to dry for a few months so he can re-evaluate me at a later date. So on the plus side at least you are still getting it.:)
If Dr’s would only listen to patients; afterall who knows how we feel, better than us.
I hope you find a good dr who listens and takes care of you.
AnonymousApril 21, 2009 at 4:59 pm
Stacey, Thats what we get for living our here in the middle of nowhere:p
When I was looking for a new Neuro, I inquired here at the forum office. They suggested Dr. Richard Barohn. He is at the Univ. of Kansas Medical Center. Go to kumed.com My clinic had already arranged my visit to Mayo and I still regret not following the suggestion from here. It is not really so far for you and may be worth the trip. You can get an appoint on line or by phone. Think about it. Jean
April 21, 2009 at 5:38 pm
No smooth talking….. Go to Mayo!!! You obviously are limited in your choices in your area and this doc is messing you up!!!!! The only thing I do agree with him on is his thoughts about sub q. Immune defficient people get so much less so the delivery is easier and perhaps they can tolerate the difference of being absorbed by the body as opposed to a direct infussion to the blood. You should use his own arguement which is actually right, that you are trying to flood the body with antibodies. ?That is correct, you want to choke out the autoantibodies, but you cannot do that with a less than a maint. dose. You have to have a few loads. He has the concept but does not know how to utilize it. What risks is he talking about, your rashes and reactions could be lessened with a brand change, slower infusion and solumedrol as a pre med. you HAVE to get to another doc. If you go to Mayo, once they establish the dx, they come up with a plan and will TELL your doc what needs to be done. I DO understand what you are going through, I had a bit of work to do yesterday talking Kevies doc into a couple of loads. We both made consessions, I agreed that he is right about needing another ncv/emg for comparison (last one 7/07) and a pt eval evry few months for actual diagnostic tools with actual numbers that we can use to guage backward slides. so we both agreed to each others terms but it was difficult. For what ever reason your doc is not receptive, so you have to take charge of this. Another possibility would be Dr. Lewis, he was at the symposium. He is in Michigan near Detroit I think. Something else about the symposium, on the last day when we were all in the big room, they handed out sheets with several studies in progress, one was about sub q, I think I remember the results being mixed. I will look for the paper in a few days and get back to you. It has been a rough week. Kevie had treatments today and it took 3 tries to access his port, it is turning, Nick is blind in one eye and the saga always continues…….
AnonymousApril 21, 2009 at 8:31 pm
For whatever reason, I didnt hear back from the pain mgmt dr today and I didnt call him back bc I was in meetings all day and then when I got home, I was very sick. I’m ok now…
Anyway with the last hour of my work day…I checked out a dr at the local Med center here…tomorrow I am going to call every number listed…preferring the med center…but will go anywhere…but I plan to call and ask if they are very familiar with CIDP before I waste my time.
Yes, my dr has the concept…He even was gung ho on the loads but when I went back after the second opinion…his attitude was quite different.
He’s very hard to argue with and my prob yesterday was that I was so let down and angry at the same time, I could barely choke words out, not to mention trying to “bargain” with him.
I”ve got to get this. My sister and husband are with me in it and promise to go and do whatever we have to. I’d like to try locally once more at least but have no issue with going to KC….that’s where my infusion co is based out of. My nurse cant tell me specifics, but I’m going to see what I can get out of her as far as who her other patients are seeing.
The second opinion dr is one of her dr’s…that’s how I found the home health…but, she’s got to have other docs, too.
Trust me folks…I’m planning this trip to Disney in Sept…you should see the research and stuff I’m doing to be prepared for the best possible time….and, our trip to Myrtle Beach in June with just me and my Hunny…I’ve GOT to be well enough to enjoy and I wont give up…I’ve got too much to look forward to.
Cant promise I wont need a kick in the pants now and then from you all…but I do promise to keep searching until I find the right dr.:o
Dawn, I’m so sorry you have probs with both boys now…just remember the saying, God doesnt give us more than we can handle…he’s making us stronger for something better.
You’re in my prayers.
Here I was telling everyone at the symposium to go see my Dr. Yeah, just dont let him now you’re going for another opinion.
Risks he was talking about, I cant be for sure b/c he mentioned something about if I got too much fluid intake from the every two weeks, we’d switch back to once per mo. My reactions…the rash, I have told him more than once, I’ll LIVE with the rash…the one time headache…was the first loading dose that they infused way toooooo fast with the kind they had to mix…I never went back to that facility or had that brand, and never had that headache again. I had minor headaches…but nothing to stop me. Heck no.
Mayo could be an option…do I just call direct to try and make an appt or what ? I’d have to fit it in with my vacations and am limited on vacation time at work…I do have FMLA in place…if I needed. I’d just like to find something local. There’s GOT to be a dr here…I know I’m not the only CIDP in Omaha…there might be one more ? ugh.
I wish I had nerve to call him and let him have it…[B]I [/B]am the one unable to walk well…[B]I [/B]am the one facing a wheelchair…[B]YOU[/B] are suppose to help me. I’d start crying before I could begin ! I guess I better grow a pair.
“Tomorrow is another day”.
AnonymousApril 21, 2009 at 9:38 pm
Hi Stacey! I truely feel your pain. Your feelings are what I have experienced many times with my disease. And I am like you! Walking means so much to me and it’s very frustrating when you feel like nobody is listeniing expecially your doctors.
I wanted to cry when I read your post. For I have seen the same thing too at times and it got very scary. I am so glad Obama signed the Bill for Stem Cell Research. Like it may do me any good but I am praying that we all see some good come out of it and see a chance at a better life.
I hope you get lucky and are anle to find another doctor that will help you out! None of us diserve this pain we have everyday! Good people with kind hearts and it alway’s seems the good ones end up catching the strange diseases that can’t be cured! Prayers heading your way! Hugs
AnonymousApril 22, 2009 at 3:58 pm
Yes–you DO need to find a new neuro.
Unfortunately, it is not supposed to happen, and the doctors are supposed to have good ethics…but it doesn’t always happen that way.
You went for a second opinion, since you are dealing with a rare disease.
It is obvious, your neuro has a “bad chip on his shoulder” now.
I have a WONDERFUL primary care doctor. Perhaps you can explain to your primary care doc what’s coming down, and if he/she can suggest a new good neuro?
I now have a WONDERFUL neuro now…but I went through four others that I did not like, until I got this one. And it turns out that he is head of Neurology at the local Medical Center, (that I did not know before going to him). He is a neuro-muscular specialist, with 4 other CIDP patients, though I am his worst.
Perhaps you can check up on local hospital “Head of Neurology” doctors–they would or might have more experience dealing with rare neuro diseases.
And when you do go to see the new doctor–explain to him you had gone for a second opinion, and that the first doctor got a bad attitude over that.
You definitely have to keep after this. The more it goes on, the more damage there is. Don’t end up like I am. (It is just unfortunate that the normal protocols to fight CIDP didn’t work for me, but at least my doctors HAVE TRIED THEIR BEST!) Your doctor is NOT trying his best…
AnonymousApril 23, 2009 at 7:46 am
Ken, thanks for the tip…that is a great suggestion to find the head of neuro. We have an excellent Med Center here…they do heart, liver transplants, etc.. Suppose to be one of the best so you’d think I’d find a decent dr there.
Ken, how long have you had CIDP ?
I got two names to follow up on. Yesterday I went thru the phone book. I couldnt believe what I was told by a few. I asked them all if CIDP sounds familiar. One told me “um, no, but you can call back this afternoon and talk to the registrar”. The other told me “no, try calling a pain clinic but that sounds painful”. Then I finally got one from my primary that t/f’d me to a nurse that said, “YES, I have heard of it”…big shock…she said the Dr I was calling about IS familiar with it but I have to send copies of my records to them and he’ll look them over and decide whether or not he can help.
Last night my nurse called and gave me the name of another dr. I will call him today and see about him first. If that doesnt work, I’ll send my records with a letter explaining what’s going on to the other one.
I wonder if my dr reads this forum.
If he does…ok. He’ll know that I had faith in him and that I’m disappointed now.
treatment today at 1…dentist appt this morning…I better get some work done.
the fight continues.
AnonymousApril 23, 2009 at 5:14 pm
You know! I never thought about my doctors possibly reading this forum! ROFL! But if they did they sure did hear from me alot last summer! Too bad our doctors don’t have a complaint forum at their offices. Boy would alot get some complaints but then they would certainly know how their ratings would be! Still wishing you good luck!
AnonymousApril 28, 2009 at 1:08 am
I had IVIG migraines, rash, nausea, infusion related muscle spasms, profuse sweating and eye pain for almost 2 years but the IVIG WAS working. I put up with all that-it lasted 5-6 days the first year and then got less. I still get nauseous/back pain/headaches going on year four.
My neuro was considered a renegade as he gave loading doses for 2-3 months to see if it worked. I literally could walk again.
When I tried to call Duke Medical School for a consult for initial diagnosis they refused to let me see any neurologists. Since I had pain they said I only could see pain specialists. I was too ill at the time to do anything and no one to help.
Some neuro don’t get it so run to find someone who does. I’ve gotten 2nd opinions on treatment from other neuro’s. Why not?? Aren’t we responsible for ourselves?? The medical folks are living in a bubble.
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