Is it normal to wait months inbetween hospital apointments

General General CIDP Discussion
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I was diagnoised with CIDP around a year ago and I have to say that my consultant has not been the best, I only found out that I had CIDP was when i was going through my first IVIG treatment when the nurse gave myself an apointment letter that it had the words CIDP, no doctor ebver told me and i had to google it as i never heard of it, even when I saw the doctor and ask what my outlook was he was not full of information a tall, and since then they dont belive IVIG treatment has worked (last treatment last August) and they have just ignored me and looks like no one wants to take on my case. But after 9 months of waiting I have an apointment next week just wondering what questions i should be asking thanks

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Where is the "professional" who referred you to whoever has diagnosed you with CIDP?

Was this your primary-care doctor?

Ask them what to expect from them with this diagnosis. Will they be the ones turning the specialist's Greek into the language you speak or will you have to find one who can? You must be allowed to understand what's happening to you.

Tell them, when you do, that you feel palmed off...

Here's how I got the humans to not be dismissive to me, EVER:

Ask them if their kid or life-partner were suffering in the way you are, if they would be as patient as they expect you to be? Say:"Is this how you do it for your own?" Make sure they look you in the eyes when they answer... Looking away is 'denying'.

Ask how they'd feel about the long duration between appointments or treatments and the obvious continuing damage to the body is to be the expectation of care. Explain how it is not enough. Not any of it.

Ask about physical therapy to help you keep strong against the current status of care. Don't suggest that they sucking at their job(tho, they are), but that if this is as good as they can do, you will need help to avoid being further damaged.

Journal, and let them know you are... Don't be a threat, but do show savvy toward malpractice.

Never go in alone. The deck is horribly stacked against us their... Bring your own witnesses and arm them with all levels of recording devices. I like mine to have a legal pad(to remind the human of court and all the little things THAT'S all about) and pencil. Have someone their to make sure of spelling and definition, so's that if we have to deny this profession our cooperation, we have complete information to find a new professional. Being the lone suffering person in the doctors office, tho it's place of "care", is actually a pretty hostile. Do you have your own supportive relationships? I sure hope so. Being complicated this way makes being a hermit not so adaptive...

If you are alone, play like you have a clan of crazy gun-toting, hill-billy kin waiting at home to see you satisfied... Most humans have an innate understanding of how humans will stick up for one of their own; tooth and nail. "Family" of any sort is a very powerful thing.

Yeah... I know you didn't intend to become a student of neurology, anatomy physiology, psychiatry, psychology, sociology, hematology, etc, but, you are. You are about to become very educated... Your body, mind and spirit need this to best recover and "be". It's the only path to better living with the highest success rates. I want to apologize, and I will, for the person you used to be and the dreams they had. The person is not dead, just in a holding pattern while the future becomes more clear... I'm sorry. But, here's a little sugar for that bitter medicine: There is a new person on the horizon that has all the stats in it's favor.

I don't mean to be all "nationalistic" and be waving our flag violently, but, it really chaps my hide(to say the very least) when I find place in our country that are simply stupid. The description of your care is lower than the service anyone would get at a coffee shop run by monkeys. How does someone treat a person slowly becoming paralyzed so glibly without assuring the person that it's just that little of a deal, if it in fact is. Frankly, paralysis is a huge deal to me and wish you were my kid so I could go beat the snot out of these folks on your behalf...

9 months of waiting?!!!!! WHAT?

See, now that in itself is just so unamerican I want to put a bag over my head in embarrassment. I hope you didn't come here from another country for treatment...

Journal these guys and send a copy to the AMA(american medical ass'ociation). Ask them what they say the standard expectation of care is.

...and find help that suits you.

Yes, starting over is no fun, but from what you've written, you aren't any more out of the wood than before despite attention and treatment. Heck, you don't even have an understanding of what your problem is as you are taking the drugs they administer to you and then what those can do, etc. Nice work, Doctors! Where did they get those degrees anyway? Tijuana?

Coming here and letting this community know of you is wise... I see better days ahead.

May the answers come soon and be welcoming. toe

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thanks toe iam not in america but here in bonny scotland ....i waited 9 months because dispite being diagnoised with CIPD and went through ivig treatment my so called doctor thought there might by an issue with me lungs so i should get that resolved first but the lung doctors told him it was a neuological issue so i was left on the side lines as they debated who shold deal with me as my condition gradualy got worse and it was only due to my family doctor going above their heads have I got an apointment with my neuro doctor more senior doctor who i will see next thursday but iam at a postion were i cant take it anymore and will let him know i need awnsers and need them now and not in 9 months

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As I remove my foot from my mouth regarding "country of care": I'm glad to read your family doctor has your back. Cling to that person and write the ministry to give them a raise.

Yes, IvIg, because of it's behavior(both good and bad) in our body can kill us if administered for the wrong infections. Before I started IvIg, I was tested for TB and pneumonia, vaccinated like I was gonna travel to the sub-tropics and x-rayed from head to toe.

Someone, maybe you, should be seeking physical therapy for your body as well. It's not fair to the medicine to just sit there taking it without exercise of some kind, because with nerve damage you won't be able to really see and feel the medicines working if you don't help yourself regain what you had. The meds don't bring back our ability to roundhouse an offender. They temporarily take away the contributing factors that took that ability away. We have to build ourselves back. Bummer, I know... I notice, tho, we aren't to compare each other since we are all so different, that those who work out, recover faster and for longer.

I won't candy coat here, Brother... It takes a bit of time to regain what this disease takes away. Nerves, especially reflex nerves heal the slowest of all our little parts. Likely because they are so complicated, compared to,say, the skin on our elbow. Movement and flexibility, breathing good air and drinking lots of clean water is key.

Depending on how damaged your arms and legs are, you may want to seek aquatic therapy. Gravity is a harsh thing on compromised legs. You will be running a tight pathway between strengthening muscles while not pissing our already agonizing motor nerves off. Please take all the time and heart you need...

I don't know how things work in your country as far as physicians appointment scheduling. I imagine it not to be too different. Most thinking professionals keep a secret/emergency window in their books. When you feel you need attention and later won't do, they can give you "now". You've got to understand what it is that makes them do this and trust that if they aren't it's not because they are horrid and suck-eggs. Sometimes patients malinger for all sorts of reasons. They act to protect all of us from that behavior... Matter of fact, too much attention can cause us to become this or at least high-maintenance and that's just not good ever, really.

I don't understand everyone's lack of a "quarter-back" or team leader who organizes everyone to get to the same goal.

I read you story and I think: Triage. Seems that since we weren't squirting blood on everyone of in v-fib, you'd be alright left alone. I guess this is their form of "first do no harm". I know it's stupid, when the outcome of this mode is a paralyzed person, but legally it's not their fault and THAT'S all that really matters sometimes when discussing maybe causing death for sure. Be in our shoes but consider what other shoes might be like...and remind those walking know it all's the same. They too can get this; and how would they navigate such a course? Screaming just like the lot of us, right?

Right.

I too was side-lined for a spell... eff'n people, sometimes. But, tho people can suck at times; the whole of life does make sense. It just seems to require we act as if we really mean what we say and want. I had to threaten my doctor with looking behind them as they descended stairs, for I'd be their to shove the stupid cow, just to get the sot to release my records to my neurologist so I could get on with my diagnosis. We say "cock-blocking" here... What's Bonny call it?

Fear not the damage you've endured while being a good patient to your professionals. Bless you for being patient for us all... We do heal. Be mad enough to swim some laps, make better eating and drinking choices, and go to the mountains or beach and roar when you can. Roaring is awesome for the lungs and spirit. You can do this any where really, but be aware that others might be startled....but might join in too.

Later, Get some kick-boxing lessons. This help us regain our coordination and the momentum of our kicks and punches helps force the currents through the damaged areas or fibers to create new pathways. Read about Qi Gong therapy for more insight on how our body's "current's" work.

I promise, I was a head on a plate screaming expletives and within 3 years I could roundhouse again. You too, buddy... you too. Maybe even sooner for you, yeah. Best to you, always. toe'ster