New doc says NOT CIDP if I am in pain?

first I start out introducing myself to new comers as an undiagnosed person and god only knows whats wrong with me. Second, what a real jerk your doctor sounds like. Even if you go to another doctor you should print out the “pain anyone” thread and mail it to him just so he doesnt mislead anyone else who comes to see him. This is not his illness, it is the illness of the good people on this site. I think that they know best. More often than not I read the diagnosed individuals complain about all kinds of pain on this site. also read the study on the link that I have recently posted. Doctors in general have trouble thinking outside the textbook unless they have real experience with a disease.

So, you are looking for a third opinion? A few years ago there was a thread on this forum entitled Best CIDP Doctors with a post that mentions three neurologists in Boston who have particular expertise in diagnosing and treating CIDP, [url]http://www.gbs-cidp.org/forums/archive/index.php/t-777.html[/url] . I see Dr. Amato and would certainly recommend him. Dr. Gerson has been recommended by a patient of his who posts here. By the way, Dr. Ropper is now at Brigham and Women’s Hospital, not St. Elizabeth’s, and reportedly counts among his patients Michael J. Fox and Ozzy Ozborne. Recently, somebody recommended a Dr. Cohen at Dartmouth in New Hampshire. I’m sure there are other specialists in this area who are good with CIDP patients, particularly at the big teaching hospitals downtown, but these are the local doctors who I have seen favorably mentioned here. And if you do not happen to have CIDP, I would hope that they would help figure out what you do have.

Good luck,
Gary

With my limited knowledge of all this, that doctor’s statement seems…well…ludicrous.

CIDP…Chronic Inflammatory [B]Demyelinating[/B] Polyneuropathy. Demyelination, by its nature, would seem to indicate pain, wouldn’t it?? Your coatings are breaking down, there are “shorts” and “shocks”, etc.; how could it NOT cause pain?

But, then, I’m a newbie. Maybe I’m wrong. All I know is my demyelination is spreading, and it hurts like “heck”. :p

Elmo

I noticed that you mentioned POEMS syndrome – please if you think that you have POEMS find a doctor that will do the testing required to get a proper dx. My husband was dx with CIDP 6 years ago and under went all the treatments with no luck. After years and years we finally found a new Doctor who took the time and dx him with POEMS. He started treatment for POEMS in October and already we can see a slight improvement. Please don’t let the doctors sluff off testing for POEMS just because it is rare and hard to test for.

Not everyone with CIDP suffers greatly from pain. Some do.

I don’t think that pain is a diagnostic criteria. The Dr. should be looking at 1. diagnosing and then 2. treating your disease, whatever it is.

Help him get to a diagnosis, the correct diagnosis, whatever it may be. Some people will try to tell the Dr what disease they have. When it is quite rare, most Dr.s won’t believe you, right or wrong. Answer his questions, pay attention to your body and get the right diagnosis. Then work for treatment.

Good luck
Dick S

I am not sure I’d trust this doctor. He doesn’t sound too open minded.
Actually, I’d tell him to “POUND SAND”. Even Dr’s with 30-40 years experience
don’t have it all figured out if so, we wouldn’t be like this.
You said you were at Boston?? Isn’t Michael Gorson up there? He is one “the
ones” Try to get in with him.

Pain is part of healing, muscle imbalances, inflammation and joint issues and unrelated issues other than CIDP. Most of us have more than one thing going on inside up and is probably why we have such huge variations in describing
our symtoms.

Granted my doctor kinda played around with me in the beginning and didn’t treat me really fast and he did wait til I had a severe turn for the worse. I think he did it so he actually was convinced I needed the IVIG.

If he only thinks you need pain meds and slints, I’d move on.
My first Neuro did that crap to me, He said I had Idiopathic neuropathy, Get a Cane. See ya in 6 months.
He was a dirt bag. I dislike Him, his staff the building he works in, and the hopital he is affilited with, all his friends and his dog(if he has one).
–tim–

I am disgusted by this new neuro. that most of his CIDP patients are all in wheelchairs or severely disabled. obviously he has no business treating CIDP patients. That he would not give them the proper treatment and allow them to be put into a wheelchair. how devastating.
I sure hope you find a new doctor. even if you think it could be POEMS find a new one. as for CIDP there is pain as I am sure you are aware.
Hang in there. there are good docs out there I will be praying that you will find a good one.

IVIG works for a lot of people but it didn’t help my son ryan. I am hoping it helps you though. No need to fear germs as it is very clean. my only advice is make sure they premedicate you, it will help with the side effects that some people get from IVIG, headache, flu like symptoms. Ryan was premedicated with benedryl and motrin and he also took a low dose of prednisone which seemed to help with side effects not being to bad. make sure they run the IVIG very slow. if they run it to fast it will make you feel bad and can make you have side effects. so slow is best. Good luck and let us know how it goes. I am glad you are getting IVIG. If IVIG don’t work for you then ask them to try plasma pheresis.

Please look for older posts on this site that discuss infusion rates and the necessary pre-medication. It’s important to know the infusion nurses is highly trained. If she/he cranks up the infusion rate it will make you very sick.If you start to feel nauseous/bad headahce then tell the nurses immediately so they can administer IV meds and/or slow infusion rate. Just be watchful.
I keep notes of IVIG brand/infusion rates/blood pressure checks.

Good News your going in for a load dose. I’m a germ feak as well. Take Lysol
with with you and hose down the place. My nurse had a bad cold while giving me my first dose. I was very uncomfortable about that, but he wore a mast around me.

first time for me went OK. I barely got in there under my own power. Within
4 days, I was walking normally. My hand strength immediately was improving. the Dr. pulled my thumb and index finger apart. Looked up at me on, paused and said. “your improved already”, The staff was really happy for me because alot of times nothing happens. The Dr. was in amazement. this doesn’t happen this fast for so many, but eventually it kicks in so be patient.

They collected all my urine during the infusions. For testing kindneys. I got home and drank alot of fluids the whole time and the urine was bright orange, like all the crap was coming out of me. Day 7 I became very very nauseated,
it was so bad, I said, I can’t do this every time. that was the last time I had any issue with it.

Now I get the treatments at home, I do work on the computer, make lunch do the dishes, go next door to my friends, watch TV with the nurse, and after we are done, I usually go out to dinner because I get the treatments on Fridays and we always get something.

With all do respect…that neuro is an IDIOT!

(there I said it!)

In nearly EVERY single article I have read about CIDP – PAIN is listed as a symptom. I think you need to send that dr a letter that simple states…”USE GOOGLE!” Sheesh!

Where will you be having your infusion done at? If it’s in a hospital – well…those are the germiest places out there. Just make sure the nurses wash their hands EVERY time they come into your room. You could also wear a mask.

I don’t have any experience with infusion centers but I would imagine the same rules apply there that apply at the hospital. I think I might take some antibacterial wipes to wipe down your chair. It is the flu season so I think it’s acceptable & people won’t think you are too over the top.

Make sure you speak with the dr Monday morning about what pre-meds you need to take. Some dr’s will order Tylenol & Benadryl & have the nurse give them to you, other dr’s will let you bring your own. It’s cheaper to bring your own.

Make sure you drink LOTS of water…starting NOW & for about 2 days post infusions. I cannot stress how important being hydrated is.

Make sure the nurses start your infusion off SLOW and ramp up SLOWLY every 15-30 minutes. This is EXTREMELY important!

I would take Benadryl & Tylenol post infusion as well…just to be on the safe side.

Be prepared to be there for a LONG time. I know at the hospital they could not even get the IVIG ready until we were checked in & in a room. Then we would have to wait for a delivery. We would get there at 9am, get the IVIG between 1pm & 2pm and leave around 7pm or 8pm. It makes for a LONG day! Bring lots of things to keep you busy & also bring your patience.

Kelly

because I wasn’t in a ‘wheelchair yet’! I replied that couldn’t that be because I’d gotten the IVIG BEFORE I needed the chair? HUMMMM. How and where a neuro is trained, plus whatever life experiences or research they’ve done … well, can and DO bias how they approach this all.
Skin issues are NOT at all uncommon with such neuro issues as your sensory nerves are not able to tell your autonomic ‘lymphatic’ nerve system what to do as well or clearly as before! DUH?
As for IVIG? At least you ARE going to give it a try! Good for you!!! As for being scared about getting IT? NAH! It’s essentially ‘pasteurized-processed blood product’! Far better than just getting a blood infusion. It’s going to be interesting at first? Then w/the pre-meds you mite get drowsy and just bring a note pad and write down what brand of IVIG they are giving you and make notes of the RATES they give it to you at. Too fast? and you could have one whopper of a headache that you do not need about now. Usual pre-meds range from 1-3 tyelenol plus 1-3 benedryls…. That’s why you mite be drowsy-ish afterwards….at the end of it tho? You mite also feel both sleepy and as if you’ve had 3 super-double strength cappucinos! The latter is the IG’s doing their thing I like to suppose.
Remember the odds – theres a 40-70% success rate in how you mite feel once getting IVIG? I sure hope that you are in the good numbers! Keep a good attitude during it all? BUT if at ANY time during the infusion, you feel something is ‘off’? ASK QUESTIONS AND DON’T let them ignore you! It doesn’t happen often, but if it does? It isn’t fun….so don’t let the ‘off-ness’ go.
BTW? It’s interesting the first few infusions? Then it’s downright boring. Bring sources of amusement for the ‘duration’. I now have infusions at home, and it’s great, as I can simply nap at will [from the benedryl] afterwards.
IT IS WORTH TRYING! I’m pulling for you.

Wow,
I am disappointed to hear that. At the GBS/CIDP symposium in Chicago last November, He seemed really focused and trying what really worked for the patient. I don’t know the blow by blow of your visit with him.

When I saw my first real neuro. I said nothing and let him ask the questions and examine me. I tend to blab on and feel that the Dr. could hone in on one specific thing you tell him and run with it. Basically play dumb and say why am I like this. there was alot I could have told him but sometimes the patient can sound like a customer at the drive thru. Wa, Wa, Whoah!

Too much information at once can be overwhelming I believe.

I also noticed I get different tones from the Dr. every time I go. they are moody and perhaps he had a bad day. They may say one thing one visit and then do a 180 the next. We all go into the office expecting the visit to go a particular way. So , I DON’T rehearse for my visits. I do have high points I plan to get across though and won’t leave until they have been brought up at a minimum.

Sorry again. I don’t know what to say. It takes months to get one of them darn appointments and that one sounds like a disappointment.–tim–

I would smack his face off his face 😀

Maybe he was just having a bad day, but you really need another opinion. We’re all in some kind of pain, whether it’s the “zaps” or the burning numb feet or the muscle cramps. It’s terrible that a doctor would suggest that you just watch yourself deteriorate!

Good luck. Your next neuro will be better.

-marie

I never EVER go in and cite web sites, unless I [I]think[I][/I][/I] there mite be some reception to a legit comment. Then only do I cite the NIH or the FDA regarding meds or research going on….but then I’ve had the same neuro for 5+ years? I always get ‘raised eyebrows’ about some of the stuff I cite as I know it’s from impeccable sources and he can find it easily IF he remembers….I simply hope the ‘eyebrow’ thing is a ‘durn it I MISSED THAT’ sort of brow lift?
However ‘training’ dictates how they start treatments…Steroids? IVIG, PP? Meds? you name it, HOW they are taught and their experiences in that training are key as to HOW any doc is going to treat YOU! Some are flexible in their viewpoints, others are NOT. I tend to avoid those who are not either flexible and/or curious. We have complicated medical issues – a sort of ‘Who’s on First?’ sort of set of problems….They are NOT easy to sort out.
I try to get neuro appts as early in the morning as possible…that way there’s less likelihood of delays w/other patients as I’m as organzed as I can be when I go in with a ‘list’ that has major and minor issues to be addressed if there is time. I’ve never felt hurried by this neuro, and I know IF I’m late in seeing him? He’s spent more time w/someone who needs it even MORE than I do! And, yes, the doc might have ‘lost a person’ on his morning rounds…a thing which would but a blanket over any persons’ day in my opinion. I accept that all. It’s part and parcel.
When a doctor says ‘no pain’? I keep a very tight and firm [white knuckle] grip on my cane[s] and try hard not to swing!
Keep at it! Yes, do please, keep at it! The right doc IS out there somewhere!

Hi,
Please stay away from that Doctor. Someone like that can only hurt you.
It troubles me that you might be getting your IVIG from another Doctor
in that same office. That could mean that you will find yourself back in
the care of the jerk who first saw you. That would be a disaster. You
might want to call the office & ask who they consider your Doctor to
be. Remember the Doctor you saw in the ER was only covering for your original one.

About the IVIG, I too had Benedryl and Tylenol before the infusion.
I had virtually no side effects. I brought small snacks with me and that
helped a lot. The 1st time can take 4 or more hours so you might get
hungry. Snacking really made a difference. I also brought very light
reading – magazines, puzzle books, etc. just to pass the time.

With me, my treatment went 4 days in a row the 1st time. Have they
explained to you how they will schedule your IVIG? You will need to know.
One thing I did learn is that having IVIG is a big time commitment. It
is definitely worth it, if it works for you.

Lastly, I did nap a lot which was great! It helped pass the time and I
felt more rested when I left. If they don’t have pillows and a blanket,
bring them from home. It really helps.

Good luck. Let us know how it works out for you. Hopefully, you won’t
ever have to deal with that jerk of a Doctor again.

Sandila

Do you know which brand of IVIG you’ve been given? And, did you keep a log on the rates? And doses? Lastly – Do you have a dermatologist? Go and see the Derm Doc ASAP! While the rash is present…they can’t do anything if they can’t SEE it! For me? I got the rash you describe and it took two tries to time the derm appointment w/the rash….Worth it totally. Two topical steroid ointment creams-first one for four-five days then the other..zapped it totally. IT is a reaction to either the IG combo? or the binders that make it available thru the IV. IF you web up the brand and look up the prescribing information? Under ‘side effects’ is a thing called ‘PURITIS’ – the Wicki definition along w/immune reaction aspects should give you clues that this is something you MUST treat with respect!
Not to mention you feel worse than if you’d gotten poison ivy? Scratch! Scratch! Itch! Scratch! NOT! Apply goop and forget! Or try to!
Warning, many neuros will go: Never heard of it! Just state you’d read the ‘prescribing information for that IG product’? And I bet your doc will treat you with a whole lot more respect!
OK for the headace? How many tylenol and or benedryl are you taking? Call your neuro ASAP about this! It’s nothing to be hesitant or squirrelley about AT ALL! I say this as I was taking 3 of each at first? Now since I’m on a different brand I only need to do the Benedryl…. Nice, but makes the rest of the day a total loss…with antihistimine doze…the the blow-back from not taking it afterwards? Wowsers, it’s hard on the sinuses!
Hope this helps! Keep faith and keep trying!

Also make sure you are drinking enough water. It’s VERY important to be hydrated!

Kelly

Drink a gatorade about two days before? Then drink as much liquids to the point you feel you’ve got to use ‘facilities’ every half hour. That way your veins will ‘pop’ and you will have a far easier time getting the infusion catheter into you….and also side effects? Well, drinking all that water, and getting the infusion? You are going to have to use the ‘facilities’ -maybe often… and most likely one handed as the catheter will be in one arm, and you mite not feel comfy moving that around much. Easy to pull-on/off clothing is the safest way to go, and don’t wait too long!
It’s good that you plan on bringing your own snacks! Why? Because I found that my infusion clinic in the hospital only provided ONE menu-Each and Every DAY! It was ‘nice’ at first? But I found I got HUNGRY for other things, things I’d not been hungry for…for ages! So I brought them! Fruit salad? Pudding Pack, Sandwich just the way I like it? You get the drift….During that last hour of infusion? I would get a sort of ‘healthy’ munchie craving sooo bad! Now I’m home? And getting infusions, I can deal with it all very easily.
IF you are in some sort of ‘infusion room’? Either bring an I-pod and listen to sounds you like? Or, prepare for some folks to create TV channel wars! Yep, it does happen. Sigh.
Go get infused, and safely! And may it WORK! I’m crossing my fingers that it is so.

J.- Please keep us informed on how the IVIG impacts your life. I am starting it or the first time this month and am a little, make that very scared about the side effects. Do they continue even after you have stopped the treatment? Are you feeling any better? I really hope you get results! Hang in there!:)