Two Questions

Hi Elmo,
I agree that not knowing is the worst. I seems you are doing all you can to see a neurologist and I wish you the very best and my heart goes out to you. I know you are suffering. Keep us posted.

To answer your questions….

You don’t want the numbness to get to your trunk because it could possibly affect your breathing, heart rate, etc.

I recommend writing down a list of all of your symptoms. You can even add the frequency of each symptom. Keep a journal of EVERY single odd feeling you have. Take that to the dr.

I don’t mean to be rude, but I don’t think you’ve seen any great dr’s. Any dr that gets overwhelmed by your symptom list needs to not be seen again.

url-http://neuromuscular.wustl.edu/alfindex.htm-url Is one of the most extensive available to mere mortals… Take a look see? [hope I did that rite?]
I’ll go searching and see what Insurance Co’s seek as key info for diagnosis…some good reference sites have evaporated off the web for diagnostics and what you need is to know what type of neuro to see and what tests you should be going thru.
The reasons for Such CIDP progressions causeing concerns are: The breathing thing? Essential for life?’; the esophagus issues? Being paralysed here isn’t again a good thing; nor are heart, stomah, digestive or bowell issues. AND, they can and do occur.
Two keys here only YOU can assess. HOW FAST is it moving? Does it come and go? Or just what I call: Marching up your body?
Now, as for talking to docs about this? I always take a small note pad or junior legal pad..on ONE page I LIST all my concerns in priority. And short clue words as to why….W/A new doc? Hit only the first 2-3, and if the doc seems open work your way down. I’ll bet IF you back up your concerns w/legit sources such as medscape or NIH research? The doc will know you aren’t messing around with things such as a pseudo ‘Vitacure’ etc. Get my drift? YOU ARE SERIOUS about getting a diagnosis, and sometimes it’s not absolute. No matter what you do.
As for going to the Mayo? The USNews and World Report has on line the top hospitals in the country-look up neurology depts? And you might find docs much closer who can help you. I live in the metro DC area, and was ready to go to Johns Hopkins to get help, but I got it at Georgetown U Hosp., nearby.
Going to GU is a long haul for me w/this stuff? And, I got all of the testing done w/in 10 miles from where I live [Tho some blood and spinal workups were sent to Mayo for analysis?] It makes it soo much easier?
My reasoning at the time, was, IF I don’t do it while I CAN, I mite not be able to get a diagnosis, or worse.
I’m not worse. So there!
OK THATS about diagnosis? As for the insurance?
Get out what’s in print from the company is a start-get on their web site and find out truly-then call and call and call! IF anything is denied? Learn ahead of time about the appeals process – I’ll bet you will win with knowledge behind you! Go for it!

Most of my symptoms started out one sided – including my face – and even now after 3 years of treatment my right side continues to be worse than the left. When I am tired (or sick) I do look like I’ve had a stroke with one side of my face not smiling as much as the other. Most of the time though it’s just numbness which isn’t noticeable from the outside. I do not necessarily believe your facial numbness is an allergic reaction – mine certainly is not and has been diagnosed as part of my disease albeit a rare symptom – well not so rare since there are several of us on here with cranial nerve damage.

Trust me – cranial and autonomic involvement with CIDP is NOT common and caused me to be misdiagnosed for nearly 2 years but it DOES happen and there are doctors who have seen this often enough to not blink an eye at you. If you feel your symptoms are progressing don’t wait until you can’t breathe – for me that happened within a matter of [B]days [/B]from feeling the first numbness in my face. Granted I was not getting treatment at the time but the progression was rapid and frightening – better to get a second opinion than end up on a ventilator… hospitals are not safe places to be right now.

Do not let them tell you CIDP patients don’t have cranial or autonomic nerve involvement – we do, it looks like a stroke or Bell’s Palsy. If your neurologist is not familiar with this possibility find another one at a major university or hospital center.

Julie

P.S. I’m going to copy this to a private message since you say you might not be back – do not give up looking and hoping for an answer. I nearly went crazy in the 2.5 years it took to get a proper diagnosis but the relief when the doctor said “I’ve seen this before” was unimaginable. 🙂

Good job on being persistent!

Let us know how that dr’s appointment goes.

Fingers crossed for you!
Kelly

Not sure I can help with those two particular questions at the top of this thread, but I can address your larger worry about finding a diagnosis, which for me is a question about finding a doctor. I note that you will be seeing somebody soon, and I hope he is either the right kind of doctor or one who can lead you to somebody who is.

If you have been reading this forum for any length of time, you have undoubtedly encountered many complaints and much frustration with doctors and diagnoses. Part of the problem, as I see it, is that people need to find the right kind of doctor, and those doctors are hard to find, particularly outside of major cities and major medical centers. Neurology is a very broad field, no neurologist can know about all its subfields, and if a doctor does not have the right training that doctor will not be able to help you. They have all seen GBS cases in residency because these patients tend to be admitted to hospitals, however it is easily possible that a neurologist may see few if any cases of CIDP during their training, nevermind seeing a representative sampling across the spectrum of this disorder. Major medical centers (Univ of Utah?) will have sub-departments for neuromuscular disorders and fellowships to train specialists past their neurology residency, and these people will be knowledgeable about CIDP. You can expect the senior staff in these programs to have a long waiting list for appointments, but you could probably call the program office to ask about junior staff availability, and about fellowship graduates who practice in your area. Be sure to ask whether they take your insurance and how your doctor should make the referral. You may or may not have CIDP, but a neurologist who has finished a neuromuscular fellowship should be able to make the diagnosis.

Good luck,
Gary

I’m so thrilled for you Elmo. I was impressed with the feedback from others about this disease and all the medical roadblocks like seeing the right doctor for the right diagnosis that can stand in your way. I didn’t know that CIDP could be that complicated with so many various symptoms.
You took all the right steps and they paid off. Hopefully this will be the right doctor. If not then I know with your persistence you will find the right one and get to the bottom of this.
I wish I had more knowledge and practical suggestions to offer, but I learned a lot just by some of the responses to your predicament. I sincerely hope that you get the treatment that you need and of course that diagnosis.
I can only imagine your frustration, but I hear the fight in you to get the medcal attention you derserve. Keep up the good work and I sincerely pray and hope that you will quickly get better.

And, where you are at…in that self.
Be as short and sweet as you can be! Hip HOOO! You got ‘squeezed in!’
Goshes, looked like your GP looked us all UP? Or at least, CIDP, and realized that it’s nothing to be sneezed at! Good for him! GREAT for you!
Next? after the neuro visit? Expect a lot of ‘vampirization’ for blood works, possible spinal tap, MRI’s w/and w/o contrasts to rule out spinal issues and the other thousand of possibilities? [Insert Smile Here!~]
As for tests? Look up ‘neuro exam. com’ and they list what neuro’s look for and sort of where they are coming from in looking at various tests. Honestly? I’ve had them all so often over the years, I just try and ‘doze’ during them if I can now. At first tho? They can be interesting, and asking techs silly questions? Well, you mite get to know more about what all’s going on than you ever realized.
Go For it!

Elmo,
Do not forget that CIDP incidence is 1/100.000 people, while MS (multiple sclerosis) is 1/1.000.
If for a small city neuro, is very strange to have a MS pacient (for the neuro),
no mention about CIDP, a hundred times more strange disease.
Neuros are more use to peripheral neuropathies consecuence of diabetes, entrapments or strokes.
All og them have symtoms that are fixe, not as ours that comes and goes like in MS.
Sorry if I´m rude, but Can´t you afford private neuros and test?
I had to do it myself. Here the insurance cover just 20 USD a month, that is nothing…
Health is more than have a new car, a new cell phone, a new LCD, isn´t it?

Pablo, Uruguay

Dear Pablo from Uraguay –

I don’t think you realize just how much medical tests cost here in the USA. I Googled “cost of health care in the United States & learned this…”More money per person is spent on health care in the United States than in any other nation in the world, and a greater percentage of total income in the nation is spent on health care in the U.S. than in any United Nations member state except for Tuvalu.”

Emily has had 4 MRI’s & each cost approximately $4000 – so that’s $16,000 just in MRI’s.

A spinal tap costs around $1500 – Emily has had 3 – so that’s $4500 just in spinal taps.

An EMG/NCV costs around $800 – Emily has had 3 – so that’s $2400 just in EMG’s.

Emily’s neuro charges $200 per visit. So if she saw him for the 1st initial visit & he ordered the tests & requested to see her after each test was performed, she would have seen him at least 11 times. That’s a total of $2200.

Together that is a total of $25,100. The average middle class income for a single person is between $26,000 & $40,000. The average income for a middle class family is $50,233 – my husband makes a little less than that.

So, in order for my daughter to get a firm CIDP diagnosis we would have had to pay over half of what our yearly income is.

This means it is nearly impossible to pay out of pocket for medical tests here in the United States of America – medical debt is the #1 reason why people file for bankruptcy in this country. Unless Elmo wants to be homeless & starving – he needs to have his insurance company pay for his medical testing.

Stepping off of the soap box,
Kelly

Kelly,

You forgot to add the costs for IVIG and medications!!!

I am most fortunate, I live in Canada and for the most part all my tests and IVIG are covered by government health care.

Rhonda from Canada

Rhonda – I was going to add up the cost of IVIG but I didn’t even want to go down that path for fear it would cause me to have a panic attack, LOL.

I really wanted to make the point that it’s just too expensive for a person to pay out of pocket for these tests in the USA. It’s ridiculous to have to pay nearly a years salary to find out what’s wrong with you.

People without health insurance couldn’t even afford the IVIG or other meds, unless they were on ‘roids which only cost about $4 a bottle but cost significantly more in the long run.

I’m hoping that the health care reform the politicians are talking about really does change the way things are done here. If it doesn’t then things are going to continue on a sharp downhill decline.

Kelly

Every part of the world is different.
Here the blood antibodies test I´m having are about 100 USD each one. I can afford it because I earn a good salary compare to others. About 2000 a month (as a chief engineer), but average people earn about 200-400 USD a month. Here everybody has a health insurance. The hospital get paid about 20 USD a month for everybody. The money comes from the health tax (the tax is 4% of your salary). But private hospital do not cover much more than the 20 USD a month for treatments. For the tests we have to pay 50 USD, no matter is a MRI or en NVC or EMG. I think is about the same problem you mention, in a different money scale. In our neighbor countries is about the same. Other problem is retirement. When we are retired we lost the insurance, and we have to have a private hospital pay monthly, but they refuse sick people, no way to affiliate to them. So what is left is the public hospital systems, paying a monthly fee, about the same as the privates ones, 50-70 USD monthly, that is very good in some service, but terrible in others.

Best regards, Pablo,

A starting point for reference and possible dx would be to ask for a nerve conduction velocity study and an emg. Typically but not always, if a demylienating process is going on, it would be evident in the study.
Dawn Kevies mom

Hi Elmo,
Typically, cidp starts at the feet and goes up. Being that the ncv/emg was already indicative of demylienation, and your breathing is difficult (provided you do not actually have bronchitis) I would say in my mom opinion, you are progressing. Kevin went for about a month with improper dx (psych and musc. dyst.) and then it moved to his lungs and bladder/bowels (autonomic response) and was in picu for 10 days while getting ivig. Within hours, really hours, he was up and running around, doing push-ups (came in not able to walk or hold a pencil) What time is your appoint today? If the doc agrees that it is in your legs, do you think he could be convinced to do a l/p to confirm or set up ivig? Be sure to stress the difficulty breathing! Could you gently suggest he view the NINDS site for reference to cidp? It would give him the standard protocol. Good luck today, keep us posted.
Dawn Kevies mom

About cost,
Kevin has used up $310K of his lifetime benefit in 3 years. That would include dx procedures, 2 port surgeries and 28 ivig treatments, 20 of which were loading doses. Don’t forget, that is a discounted insurance amount!!!! For instance, Kevin’s 80g of ivig drug only, is billed at $31K the agreed upon contractual amount pays at $8k. Huge discount!!! A person with out insurance does NOT get a discounted amount. I would estimate that the total amount spent $310K without discount would be at least a million dollars!!!
Dawn

I’ll take that to mean you didn’t have a good visit with your doctor yesterday. I’ve had many of them. Don’t give up – let us help you – if not with anything practical then at least emotionally. 🙂 Of the hundreds of times I was told “it’s not this or that” and “I have no idea what’s wrong with you” it only takes one second and one doctor who says “I know what it is” to erase all that.

Where do you live? Perhaps we could recommend somebody to you… I go to Johns Hopkins and that’s the answer I got walking in the door

“I know what you have, it’s rare but I’ve seen it before”

And you can imagine how that started the flood of tears after years of not knowing to finally have an answer and he was my THIRD neurologist, the second being at Georgetown also a medical college but he had not seen it either. Have a little faith in yourself that you know something is wrong and keep searching for answers. It may take years but when you finally get an answer the jubilation that you are not crazy will dim the pain of the search for answers and lift the fog of misery from your shoulders. There were many times I wanted to quit searching for answers, many times I stuffed myself under the covers and cried because I thought I was just nuts, hundreds of tests, half a hundred different doctors – plenty of times I was sick of the whole search for answers. Fortunately I had these fine folks here on the forum to keep pushing me and my husband whom I call “The Sheriff with the Velvet Handcuffs” (nothing weird meant by that!!!) who kept pushing me to find answers, to keep going, to broaden my search and not give up. You must allow yourself to be pushed if you feel like giving up – I didn’t want to, wanted to quit and just stick my tongue out at the world – but my friends and family goaded me into one more doctor after another and I did finally get an answer 27 months after I started looking.

Don’t give up Elmo.

Julie

Elmo,

Don’t give Up!

I like your new plan…could you convince your GP to order the LP as EMG?

That way you might have some answers sooner than later.

Keep your chin up and remember you are in control, keep telling the doctors what you need!

Rhonda from Canada

Hi Elmo – It is understandable you would be so upset. It’s difficult when dealing with dr’s who don’t want to listen. I had a similar situation with Emily about a year into her diagnosis which lead me to yell at the dr & never return to her office.

I’ve been thinking about your symptoms. The Lewis-Sumner variant of CIDP starts in the arms & is asymmetric in presentation. You should Google it.

I believe you do not have to have absent reflexes to have CIDP. It is normal to lose them but a few people will not. Emily’s arm pains started in the spring of 2005 & leg pains started in late Sept or early Oct 2005, after vaccinations. She had reflexes in Sept, Oct, & Nov of 2005 but still had pain in her legs. December 28th, when she was admitted to the hospital, she did not have reflexes. They came back within a year of starting IVIG.

I was told the correct way to do an EMG is to do it on both arms & both legs during the same session. I would recommend having your arms done all over again along with your legs. That way you will have the most complete data.

I would also suggest getting a spinal tap. It’s really NOT that bad. Emily has had 3 & during the last one, at 5 years old, she was wide awake during the whole procedure. It doesn’t take long & was relatively painless for her.

Many people here have emailed Dr. Richard Lewis (of the Lewis-Sumner variant) and he has emailed them back offering advice & has even given dr referrals. Maybe you should email him, tell him your story & see what he says. He may know of a neuro in your area.

Good luck,
Kelly

[QUOTE=Elmo] Please forgive my emotional response yesterday. I was having quite the “pity party” last night…:rolleyes:

“The pain/numbness in your trunk, arms, face, etc., CANNOT be neuropathy…neuropathy only occurs in the legs.”

Another interesting comment: “This CANNOT be CIDP because you still have reflexes in your legs”. Is that a true statement? I honestly don’t know; I thought I’d read that it could be “diminished” or completely gone.

“It started in your arms…CIDP NEVER starts in the arms.”

Again, I apologize for my melt-down yesterday. I HAVE to learn NOT to get my hopes up when seeing doctors…there’s a reason they call it “PRACTICING” medicine…..:D[/QUOTE]

Pity Parties are allowed as long as we are all invited and there is plenty to drink… as for your neuro’s unbelievably ignorant statements – GET ANOTHER ONE!

Neuropathy can occur ANYWHERE you have nerves BY DEFINITION. I also have pain and numbness in my face and trunk and my neuro says it can most definitely be part of CIDP. CIDP typically starts in both legs ascending – however everybody is different and I don’t know what average figure they use to come up with “typical.” Mine started in one leg – moved up my body on that side alone all the way to my face before going back down the other side to the leg. So that’s not really typical either but I still have CIDP. You can have reflexes with CIDP – it depends on the degree to which your nerves have been damaged. Lewis-Sumner is also a possibility so definitely get tested for that one.

I think my biggest concern is that it seems like your neuro stopped learning about 10 years ago and has decided if you don’t fit into his little box of knowledge then you aren’t sick. There is a lot of very current research out there that supports a high variation in the presentation of CIDP and there are so many kinds of neuropathies it disappoints me your neuro isn’t pursuing an answer more aggressively. If at all possible can you find somebody else who isn’t growing mildew out of his ears?

And I had to laugh because that is EXACTLY what my husband said to keep me going too – the practicing comment. 😀 Also I posted a link to a great article about being prepared for a doctor’s visit – it’s in the main forum – you should read it. 🙂

Julie

Elmo – Awhile ago I found his email address but I can’t seem to find it now.

I Googled him & got this email address: [email]Ralewis@med.wayne.edu[/email]

I also came up with this page: [url]http://www.dmc.org/physicians/Details.aspx?FirstName=richard&LastName=lewis&Gender=&AcceptsChildren=&Department=-1&Specialty=-1&Disease=-1&School=-1&Location=-1&Language=-1&Insurance=-1&Board=&KeyWord=&ClinicalInterest=&ResearchInterest=&Affiliation=-1&Group=-1&Ethnicity=-1&GUID=7c207904-493f-4861-968e-77405589789d&PostalCode=&PostalDistance=&City=-1&physician=4566[/url]

The last link has his office info & maybe you could call them & ask for his email address.

Maybe you could even get an appointment with him – that is if you could make it to MI.

Hope that helps.
Kelly

Emo,
Don´t get mad with me (or get I do no mind, with this disease I´m rady for anything)
you can buy this book to learn about peripheral neuropathy, and be ready to argue with any doctor.
I have it an is really good. There is other from the same editing about Guillain Barré.
Both are good, not only in CIDP, in all kind of neuropathies.
I found there the antibodies I have raised in my blood (anti-GD1a and anti-MAG)

Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop (American Academy of Neurology) by M.D. Norman Latov

[url]http://www.amazon.com/Peripheral-Neuropathy-Numbness-Weakness-Neurology/dp/193260359X/ref=sr_1_1?ie=UTF8&s=books&qid=1255130809&sr=8-1[/url]

[QUOTE=pjthomasset]Emo,

Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop (American Academy of Neurology) by M.D. Norman Latov

[FONT=”Comic Sans MS”][SIZE=”2″][COLOR=”Sienna”]It is the Neuropathy Association, a private organization not in any way affiliated with the American Academy of Neurology, and the book was an extreme waste of money. I bought 3 copies, thinking it would give good objective information about the disease to my 3 grown children. All it is is “feel good” and if you don’t, there’s something wrong with you …

Well, yes, there is something wrong. I would much prefer a thorough, rational, lucid discussion of the problem rather than a bunch of “feel good” or else it’s your fault hokum.

Far better to go to the National Institutes of Health or the Mayo Clinic or even to WebMD … use their sites. Get some good solid, truthful, objective information.[/COLOR][/SIZE][/FONT]

I can only say that thanks to this book, my father now knows that the burning pain in his feet, was caused by the furantoin, he is taking preventing the prostatic cancer infections.
He saw many doctor, none of them said nothing about furantoin and peripheral neuropathy.
Only this “waste of money book”…..

Dear Elmo,

Sorry to hear you had a bad experience with your neuro appointment. But, as you mentioned in your post, that doctor was a sleep specialist. And what did he tell you? To get more sleep. Are you surprised? Let me be blunt: if you think you have a neuromuscular problem, you need to see a neuromuscular specialist.

I googled the doctor you mentioned, Dr. Bromberg at the Univ of Utah, and he looks like exactly the kind of doctor who could help you. I would expect, however, that he might have a long waiting list for appointments. And by the way, I would also think it likely that he may accept a large variety of insurances, so it would certainly be worth calling his office to inquire. His webpage at the Utah Neuro Dept says that he is the Director of the Clinical Neuromuscular Fellowship, and that he has mentored 20 fellows. Some of them may still be in the area and these are the people you should try to see if Dr. Bromberg is not available, not just a neurologist who has done a residency with him but a graduate of the Neuromuscular Fellowship. In addition, there are other doctors on the Neuro Dept faculty page who have experience in neuromuscular disorders. His webpage also says that Dr. Bromberg does research on EMG techniques, and thus may be picky about who performs the tests for his patients, so you might want to get a recommendation from his office before scheduling any testing through your primary care physician. (My neurologist complained that my first EMG/NCV tests were poorly done, which annoyed both of us, and is a problem you want to avoid.)

It looks like you have some options, Elmo, but you need to do your own research because you cannot rely on your personal physician to be knowledgeable about your particular special needs. But you still have to face some questions: How important is it to see the best doctor in town? Would it be worth a long wait for an appointment? Who takes your insurance? You have some choices, but you may have some hard decisions, too.

Good luck and keep us informed,
Gary

For anybody else who is reading this, Dr. Bromberg maintains an interesting looking website at eneuroinfo.com .

His training to me was set back in the late 60’s – 70’s! Hey Doc it’s 30 years later and a LOT more is known. And? Can I say: Welcome to the ‘second opinion and diagnosis’ train.
I’ve had a head of a top neuro dept at a teaching hospital say to me: “You can’t have CIDP and get IVIG. You’d have to be in a wheelchair!” [Especially w/o a sural biopsy] I begged his pardon and recited off the criteria for diagnosis and treatment w/IVIG and stated that I’d met 8 of the ten criteria w/o the biopsy and by the way doc? Did you know some insurance co’s won’t pay for the sural biopsy anymore? It’s considered too invasive and prone to infections; besides it only tells you what other tests have already told you.
IF there aren’t any other neuros who are not in his practice, go further afield. You don’t necessarily have to go to the Mayo to get diagnosed! Keep at it and keep faith in your instincts. Take care and keep the fear demons at bay.

This referred site will not work for me. is it correct?:confused:

Elmo, I can so sympathize with you. I am in the same place. I worked really hard to get referred to Dr. Gooch at USF and he refused to take me as a patient. I was referred to another doctor in their neuro dept. and was told I could see this other doctor next Feb.:mad: I checked out the doctor and learned he is just out of school! I felt very “kicked to the curb.” I cancelled that plan and my neuro then referred me to a Dr. at the University of Miami.
I will see Dr. Sharma Thanksgiving week. I am very impressed with his credentials and research publications. I am once again hopeful. Please let this be the doctor that will take me serious.
Do not give up, keep digging and asking. Opportunity does not knock at you
door…you have to go find it!
My best to you,
Sue

Sue – I used this link & got the website mentioned above:

[url]http://www.eneuroinfo.com/general.php[/url]

There is an informational article on CIDP here:

[url]http://www.eneuroinfo.com/neuromuscular/Primer%20of%20CIDP.pdf[/url]

Kelly

[FONT=”Comic Sans MS”][SIZE=”2″][COLOR=”Sienna”]Elmo, some time back, page 3 I think, Emily’s Mom wrote about how prohibitive are the costs of our diagnostics and treatments. It’s part of our individual horror stories, I think. I’m on SS. There are others here who have had to stop work early and go with SSD. That’s something I had to do for quite a different problem. That gives the usual SS benefits, but at an earlier age.

Once diagnosed, that might be an option for you.

But a firm diagnosis is the main concern for you at this time.

If you lose your job, you can hang on to company insurance through COBRA though it is terribly pricey. It might help get you through for a period of time. It did for me.

And here I am wondering how I’m going to handle IVIg when Medicare doesn’t want to pay for the treatments ( except, I’m told — though I don’t know this for sure — at only a very few specific treatment centers in the U.S. ).

I doubt any of us are Rockefellers or Vanderbilts. We just have to hang in there and muddle on through as best we can.

So, to you I say … Hang In There!

And when I’m posting here and in a blue funk ‘cuz things are going screwy for me … please tell me the same. 😉 [/COLOR][/SIZE][/FONT]

The last thing I intended, Elmo, was to make you defensive. It’s just that I cannot count the number of times I have read people on this forum complaining about their doctors, frustrated at not finding answers, all while their condition worsens. Just a few posts above, homeagain relates a visit with “a head of a top neuro dept at a teaching hospital” who was not able to help at all. There are people on this forum who have gone years, and gone through many doctors, before getting a proper diagnosis and treatment. Not everybody who comes to this forum knows what kind of training a doctor would need in order to work with CIDP patients. You won’t get the right kind of help unless you get the right kind of doctor. That’s all I’m saying.

Ironically – or coincidentally – I watched the documentary Sicko last night about the American health care system. I live here and thought I was familiar with feeling like a prisoner to insurance and drug companies until I saw that movie. It shocked me – particularly the part about our 911 volunteer heroes who have been refused healthcare because on 911 they were “volunteers” – not paid by the government. The movie had me sobbing on the couch and at times laughing too – if nothing else Mr. Moore is quite bold in his attempts to embarrass the US Gov’t about how we treat our own people versus the full scale health care given prisoners at Guantanamo Bay (:eek: ). No matter how bad things are for me I know that right next door things could be a whole lot worse so I am grateful what I have.

On another note I tend to have a lot of well-meant advice, all of which needs to be sifted through the “what does this mean for me” strainer and the rest tossed down the drain. I can tell you that whatever I might have said or might babble on about is never intended to denigrate or point out the obvious. Anything that might appear that way is just because I don’t know everybody’s personal history so I tend to start with some of the things I personally missed my first time around the medical mystery tour. As not everyone takes the same steps along the path we might all have different pieces of advice on where to step and what side paths to try or avoid to help each other’s paths be smoother.

P.S. I saw the head neuro at a teaching hospital who told me that the only thing my disease resembled to him was a mysterious illness he saw in Cuba that a bunch of old men who sat around drinking rum and smoking cigars all day long had. (I kid you NOT he actually said that to me in front of my sister-in-law who is a DOCTOR!!!) I currently see an MD/PhD at Hopkins who isn’t the head of the department but part of a team of specialists… MUCH better… no cracks about old drunks from this guy!

Julie – I CANNOT believe that dr. It reminds me of a saying Emily & I yell when we’re in the car & someone is driving like an idiot. We yell “Where did you get your license? Out of a Cracker Jack box?” And I think I would have yelled that at that dr too. WHEW…what an idiot, LOL.

Kelly

There are good docs out there….hiding under rocks, at times I believe. And there are bad docs, and, some borderline ‘quacks’. I’ve experienced the whole spectrum and it’s up to you to engage someone you ‘feel’ mite work to get on your case and also be an advocate. Tho far easier said than done? It can and does happen.
At this point, to a degree? You are allowed to act or over-react to things. It comes with the territory. Recognizing and learning about how to handle the stress and stressors that come with this stuff can help immensely. It’s because this CIDP stuff can be totally overwhelming at first, and even as it continues.
Understanding CIDP first is a key, not the why’ of it happening? But more of the HOW’s of it affecting you. It helps your mind over-ride some of the body’s constant ‘red alerts!’ about not being happy with the situation. At least, it’s worked and helped for me. Not to say the whole panic and fear thing isn’t there? It’s just mostly on the back burner, so to speak. But that’s been after seeing many docs, getting diagnosed and now treated. Only two set-backs so far, and I consider myself fortunate!
Lending you some of the strength you’ll need to get thru this! Along w/a heap of hope!

[FONT=”Comic Sans MS”][SIZE=”4″]It is encouraging to hear that a doctor is prescribing healthy ways to deal with stress instead of instantly prescriping medication. My first neurologist wanted me to take anti anxiety medication because he said I was over anxious about this disease, he also said I spent too much time on the internet doing research, and suggested that I take a vacation. I found myself speechless and in shock. Needless to say, I haven’t been back to him and I found a new neurologist. While I do believe, medication is with out a doubt, necessary in many cases, there are some doctors that are pill pushers. As [U]many[/U] people have said before me, it is truly difficult to find a REALLY good doctor. I have only been diagnosed since June 2009, so I don’t know if I have found the best neurologist in my area (Henderson, Nevada) but I do know that I will continue the search if I haven’t. I hope you have great success in finding a great doctor (don’t forget to look under the rocks).:o [/SIZE][/FONT]

It is often HARD, very hard, to get in the door? But once you are in? You ARE in! Be open and amenable to cancellations? My only rule was they had to give me a ‘day’s’ notice. So’s I could every so slowly [turtle speed?] at the time prepare to get ready and get there on time. Never, EVER ask why there was a cancellation! Just take it as your good luck!
More realistically tho? Don’t expect miracles? With some sort of AH-HA! moment. It doesn’t work that way.
Usually tests, tests and more tests [even tests you’ve had before, but this time by testers that the doc TRUSTS]. He/she will want consistent results from a tester that is deemed reliable in their estimation. Ergo, repeat tests, but good docs have staff that make it all palatable to insurance companies!
I will tell you tho, from my own experiences? The one neuro I’ve stayed with ended my initial ‘evaluation’ with an ‘I think I/we can do better for you’ and he has! And gratitude goes with my appreciation and not deprecation of anything I’d outlined as problems and concerns. Relief and hope were two words I never thot to hear with my situation at that time!
I think you get my drift? These special docs are out there? BUT you don’t have to see the chief cheese, Maybe #2 doc is just the one you need. Who knows?
My fear for you is that things seem to be ‘progressing’? And the way I felt about THAT is that it WILL NOT DO! Not Acceptable! Don’t put me off.
YOU have to, MUST be honest and candid with such docs, and leave nothing out! Think of family histories of aunts, uncles, cousins and beyond for clues as to whether this mite be hereditary or not?
Keep at it, I hope and don’t lose faith in your instincts! Take super care.

Unfortunately, it is very hard to find a doctor who will meet all our hopes and expectations. CIDP is not a common condition, and doctors with experience in treating it are not common either. On Wednesday, I am going to be a demonstration patient for students at Harvard Medical School. I did this last year, too, and it was a good experience. I wonder whether they will see any other CIDP patients during the rest of their medical education.

Someone’s gotta be in the bottom half of their class!
Personally, I don’t like the ‘star’ docs? I much prefer the numbers 2 or 3 working under them. WHY? Because THEY are gonna try harder, listen better, will take more time w/you, and, thus, maybe treat you better. Besides, they’re easier to make appts with, and also reach when something truly quirky comes up, and you, know? It always does.
I’ve experiences ‘samples’ of the ‘stars’, the not-stars but above average, and those who one can’t really report because the medical profession really doesn’t have mechinisms for complaints, unless one can PROVE they’ve died from mistreatment. Won’t go into that further as it gets political. Sigh.
As for finding a doc that you can work with? IF THEY LISTEN and respond, or try to respond to questions…. you’re getting somewhere. Sometimes the best words from a neuro are: ” I DON’T KNOW”. That sort of honesty is a good sign.
Keep faith all. We all have a more finely forged core of steel in us! And, it’s one that won’t break, but bend as needed.