Bugger !

    • Anonymous
      February 15, 2010 at 4:47 pm

      deleted post

    • February 15, 2010 at 5:01 pm

      Hi John,
      While the elevated protein is not what you would have hoped for, it at least does give you a dx. Now with the help of your docs you can find a treatment plan that will work for you whatever it may be. If you any questions about the standard protocol I am sure many will be here to help you. Hopefully now you can move forward and get your life back and not wonder what is happening.

    • Anonymous
      February 15, 2010 at 5:06 pm

      thank you Dawn

      As yet, though dont have a diagnosis and my neuro insists its not CIDP !

    • Anonymous
      February 15, 2010 at 5:10 pm

      Since we’re quoting Jack Nicholson, thought I’d add my favorite, from “The Bucket List”…

      As he finishes puking his guts out from chemo, he looks into the bathroom mirror and proclaims, “Somewhere, some lucky S.O.B. is dying of a heart attack right now”. ๐Ÿ™‚

      Perspective. It’s all a matter of perspective.

      Elmo

    • February 15, 2010 at 5:15 pm

      John,
      Do you live in the UK? If so, can you switch docs or do you have to stay with the same one? Do they suspect ms? Have you had an mri to check for lesions regarding ms? Have you had blood work with an ana? Have the basic heavy metals been checked? What are they thinking? Do they give you any indication one way or another? Try looking up posts by member name Norb, I just a long shot guess, see if you have any similarities to him. Have you done any of the biopsies? nerve, skin?

    • Anonymous
      February 15, 2010 at 5:18 pm

      yes had spine MRI ANA was negative. def not MS neuro says. heavy metals never checked.

      I dont want nerve biopsy – they can bloody well work out wat I have got without that ~

      I could see another Dr yes

    • Anonymous
      February 15, 2010 at 5:19 pm

      [QUOTE=Elmo]Since we’re quoting Jack Nicholson, thought I’d add my favorite, from “The Bucket List”…

      As he finishes puking his guts out from chemo, he looks into the bathroom mirror and proclaims, “Somewhere, some lucky S.O.B. is dying of a heart attack right now”. ๐Ÿ™‚

      Perspective. It’s all a matter of perspective.

      Elmo[/QUOTE]
      Yes

      A great movie too Elmo:)

    • February 15, 2010 at 7:21 pm

      John,
      I don’t know where you live, but if you could get them to do heavy metals, ask about lymes disease. If you do not live in an area where it is prevelant have you visited anywhere in the last couple of years where they are? How about skin biopsy, nothing like nerve biopsy. Did you get to check out what Norb has? What about mystanias gravis?

    • Anonymous
      February 15, 2010 at 7:38 pm

      thanks Dawn

      Dont think i came into contact with any heavy metals, unless the air con in my condo in singapore was belting it out. Lymes; I had a PCR DNA test which was negative. Mystanias gravis mainly affects the face I think?

      I live, at the moment, in the UK, cos I am a brit, which makes my condition 10x worse cos I hate it ๐Ÿ™‚ Wanna go back to the sun in se asia where I was living until may 2009.

      This is a dreary rain-sodden, class conscious, badly run by mediocre politicians, country full of celeb banality (UK) and it’s making me worse being here at all. I hate it with a passion that is hard to express ๐Ÿ™‚

      I think I must be a reincarnation of an aristocrat running Singapore in 1860:)

      john

      PS I did start to look at Norb’s postings but there are zillions:)

    • Anonymous
      February 15, 2010 at 8:07 pm

      Kelly,

      I was intrigued by your last post, as I, too, am preparing for another neuro appt.

      You mentioned a skin punch and heavy metals…what else should those of us who are early in the diagnosis process be requesting? What’s “reasonable”

      Thanks,

      Elmo

    • Anonymous
      February 15, 2010 at 8:37 pm

      Elmo – Are you talking to me?

      I can give my input here even if you aren’t.

      I would be requesting a lumbar puncture to check protein levels & spinal fluid pressure, EMG/NCV of all legs & arms, MRI with and without contrast of the brain & spine, heavy metals test, & ANA.

      That’s all I can think of for right now.
      Kelly

    • February 15, 2010 at 9:20 pm

      John,

      Sorry to learn of your elevated protein levels. What did your neuro have to offer in the way of explanation??? :confused: Seems very determined to not have a conclusive diagnosis. The student neuro-wannabe running my nerve conduction velocity tests diagnosed CIDP as did the head of the EMG lab. My 1st neuro concluded ( rather arrogantly ) I had a B-12 deficiency. (Maybe he moved to London … ahem).

      Anyway, I do enjoy your wit and humor ๐Ÿ˜€ .

      Beaches and escape seem attractive, but correct diagnosis and expeditious treatment are paramount. So chin up, keep after those bloody neuros.

      Go to the beach after you’ve got this thing diagnosed and on the run.

      Gary

    • Anonymous
      February 15, 2010 at 10:01 pm

      [QUOTE=GaryO Houston]John,

      Sorry to learn of your elevated protein levels. What did your neuro have to offer in the way of explanation??? :confused: Seems very determined to not have a conclusive diagnosis. The student neuro-wannabe running my nerve conduction velocity tests diagnosed CIDP as did the head of the EMG lab. My 1st neuro concluded ( rather arrogantly ) I had a B-12 deficiency. (Maybe he moved to London … ahem).

      Anyway, I do enjoy your wit and humor ๐Ÿ˜€ .

      Beaches and escape seem attractive, but correct diagnosis and expeditious treatment are paramount. So chin up, keep after those bloody neuros.

      Go to the beach after you’ve got this thing diagnosed and on the run.

      Gary[/QUOTE]
      Thanks Gary

      Well treatment seems some way off yet. Am hoping a course of steroids might do the trick. If its IVIG then I am stuck in uk for God knows how long:(

      Feel very trapped.

    • February 15, 2010 at 10:20 pm

      Hi John,
      Mini lightbulb moment. Your mention of Singapore triggered something to me. I remember reading about an Asian Variant of cidp called AMAN It stands for acut motor axonal neuropathy. It is more prevelant in Asian countries because of the sanitation and the camphobacteria (spelling) I remember it has an elevated protein, but the neurophysiology presented differently in a ncv/emg than you would expect w/gbs cidp. It seems to affect the axons and not so much the inflamation on top of the myelin sheath. It was 3 years ago that I read about this when we started our journey so please “check” my facts. Also, on Norbs signature on the bottom, he lists his dx, again, it has been a while, so “check” his posts, but I think he had some sort of acronym anti mag. I think it was some sort of myloma that is not malignant but caused neuro issues. Please “check” in case I botched the info. Boy, you have lots of research tonight!!

    • Anonymous
      February 16, 2010 at 3:35 am

      Hiya.

      AMAN, I believe, is considered to be a form of GBS, but not of CIDP since it’s acute. But there are rare variants of CIDP, and, as Dawn noted, as with GBS some of these seem to be more common in East Asia than in the West.

      John, what I was trying to remember last night when we spoke was chronic axonal neuropathy — a group of symptoms which for many years were attributed to other diseases (diabetes, alcoholism, etc.) but which are more and more being researched as a form of CIDP — akin to AMAN’s relationship to GBS. For example, there’s a form of multifocal motor neuropathy that’s axonal rather than demyelinating.

      Keep fighting,

      Deb
      London

    • February 16, 2010 at 6:52 am

      Deb, I think you are right about the gbs part linked to aman. Maybe the part I mentioned about the neurophysiology being different in aman is because with gbs, the demylienation is not present on the myelin so it doesn’t show up??? I wonder how they determine these variants and how they decipher between gbs/cidp?

      JOHN I ALSO REMEMBER READING THAT FOR WHATEVER REASON, IF IT IS GBS, NOT CIDP STEROIDS ARE NOT RECOMMENDED.

    • February 16, 2010 at 7:02 am

      Hi Elmo,
      Are you asking me? Heavy metals and lymes are usually one of the first tests given kind of protocol. So you may have had them. The skin biopsy I THINK checks for small nerve fibers. There is also a nerve biopsy done at the ankle, sural nerve, that can show each episode of demylienation. The view under the microscope looks like an onion, each layer representing a different episode or relapse if you will. Not all people like that test and others have no problem it heals fine, the results are usually pretty conclusive, all done and have a dx. Others do not like it at all as they had a bad experience in the healing and continued pain at the site. It is a small punch that they remove from the area. If your lp, ncv/emg are ok and still no dx it is sometimes used, as everyone does not always present typical regarding positive lp, ncv. You could find info on it on past threads as it has been a topic several times.

    • Anonymous
      February 16, 2010 at 8:41 am

      You should have EMGs done. Even if you have had them before, if nothing definitive turns up, you might want to have them done again by a different doctor. It seems there is a lot of skill variation there. Turns out my primary neuro had no skill in that area. Also look into the skin biopsy, it is not a big deal and may show small fiber issues.

    • Anonymous
      February 16, 2010 at 8:56 am

      [QUOTE=eightplusfive]Hiya.

      AMAN, I believe, is considered to be a form of GBS, but not of CIDP since it’s acute. But there are rare variants of CIDP, and, as Dawn noted, as with GBS some of these seem to be more common in East Asia than in the West.

      John, what I was trying to remember last night when we spoke was chronic axonal neuropathy — a group of symptoms which for many years were attributed to other diseases (diabetes, alcoholism, etc.) but which are more and more being researched as a form of CIDP — akin to AMAN’s relationship to GBS. For example, there’s a form of multifocal motor neuropathy that’s axonal rather than demyelinating.

      Keep fighting,

      Deb
      London[/QUOTE]
      hi deb

      I think you onto something there. Sounds a lot like wat i got.

    • Anonymous
      February 16, 2010 at 8:58 am

      [QUOTE=Dawn Kevies mom]Hi John,
      Mini lightbulb moment. Your mention of Singapore triggered something to me. I remember reading about an Asian Variant of cidp called AMAN It stands for acut motor axonal neuropathy. It is more prevelant in Asian countries because of the sanitation and the camphobacteria (spelling) I remember it has an elevated protein, but the neurophysiology presented differently in a ncv/emg than you would expect w/gbs cidp. It seems to affect the axons and not so much the inflamation on top of the myelin sheath. It was 3 years ago that I read about this when we started our journey so please “check” my facts. Also, on Norbs signature on the bottom, he lists his dx, again, it has been a while, so “check” his posts, but I think he had some sort of acronym anti mag. I think it was some sort of myloma that is not malignant but caused neuro issues. Please “check” in case I botched the info. Boy, you have lots of research tonight!![/QUOTE]
      thanks Dawn

      but i dont have any motor loss, aparently

    • Anonymous
      February 16, 2010 at 9:10 am

      …for all your input and support. It helps.

      I am struggling badly with uncertainty, depression, anxiety, anger, drs, the weather, the United Kingdom of munchkins.

      Can some sent me $10 million, so I can have a Dr with me 24/7? ๐Ÿ™‚ I pay you back in the next life LOL

      And organise Air Force One to take me to John Hopkins? Some of you must know Barak, or have his cell phone number.

      john

    • February 16, 2010 at 9:20 am

      John,
      Sorry, that is one phone number I would not want, so can’t help you with that. About the depression,anger etc. Totally normal, there are stages of this disease. Once you get a dx, things will be smoother. In the mean time. Cymbalta works for anxiety,depression, as well it helps with pain. Maybe you could ask the doc about it. I get the feeling you have reservations about uk, how come/ Maybe you could private message me, I have quest. about the uk that maybe you could answer. Let me know if you are up for the discussion.

    • Anonymous
      February 16, 2010 at 9:40 am

      Dawn,

      Please accept my apology for calling you by the wrong name; ’tis my greatest fear on boards like this! ๐Ÿ˜ฎ

      Thank you, and Kelly, for responding with suggestions about what tests to request. I’ve pushed for an LP from the first two neuro’s, with basically no response. With my EMG results confirming demyelination, reduced velocities, and prolonged f-waves, it has always seemed the logical next step, to me. But, I am neither God, nor a neuro with a bad case of “mistaken identity”. :rolleyes:

      John…are ALL Brits such whiners????? ๐Ÿ˜€ (that’s poor, American humor/sarcasm)

      I refer you back to one of your countrymen (again)….

      โ€œNever, never, never, never give up.โ€

      “If you find you’re going through hell, keep going.”

      or, my favorite of the day…

      “I like a man who grins when he fights!” ๐Ÿ˜Ž

      “Stiff Upper Lip”, “Rot, Rot”, and all that stuff….

      In all seriousness…if this is your first encounter with a chronic illness, a psychiatrist/psychologist/good bartender IS required. Chronic illness often causes grief…you’ve LOST something very near and dear, your health…and it’s just a devastating as losing a loved one. Except, in this case, your former self is the “loved one”.

      [B][I]Especially keep that sense of humor; it will be your best weapon and closest ally.[/I][/B]

      Elmo

    • Anonymous
      February 16, 2010 at 9:48 am

      [B][I]”Sorry, that is one phone number I would not want, so can’t help you with that.”[/I][/B]

      Maybe you could give him Sarah Palin’s number….she likes “Tea” lately….YOU BETCHA! ๐Ÿ˜€

    • Anonymous
      February 16, 2010 at 10:17 am

      yes we are Elmo. Its the weather.

      But if you look at my posts, I have only said nice things about americans:)

    • Anonymous
      February 16, 2010 at 10:27 am

      [QUOTE=Dawn Kevies mom]Deb, I think you are right about the gbs part linked to aman. Maybe the part I mentioned about the neurophysiology being different in aman is because with gbs, the demylienation is not present on the myelin so it doesn’t show up??? I wonder how they determine these variants and how they decipher between gbs/cidp?

      JOHN I ALSO REMEMBER READING THAT FOR WHATEVER REASON, IF IT IS GBS, NOT CIDP STEROIDS ARE NOT RECOMMENDED.[/QUOTE]

      Hi, Dawn.

      The main diagnostic differentiation between GBS and CIDP is the length of time you get worse — with GBS it’s four to six weeks and then you start getting better; if you continue to worsen after eight weeks it’s CIDP. (That’s not counting subacute, which falls in between.)

      Of course, with all the variants of GBS and CIDP, and the fact that no two of us are alike, and that there’s acute onset CIDP and recurrent GBS, ad nauseum (and yes, there are some because of autonomic nerve damage who have nausea), and the necessity of having to be able to prove unseen symptoms and disabilities through tests, sometimes I don’t wonder that doctors can’t figure it out.

      Ah, but someday Star Trek will come true and they’ll have one of the gadgets that they can run down your body, diagnose exactly what you have, and cure it. I will have died the previous day.

      Keep smiling,

      Deb (the British/American one — or is it American/British?)
      London

    • Anonymous
      February 16, 2010 at 10:33 am

      the ‘stiff upper lip’ thing was at its height when the UK was plundering the rest of the world. There is a connection between national aggression and the suppression of personal feelings. Positivity, which is a very American thing, and a good thing has also led to some disastrous wars, in the shape of over confidence and invincibility.

      After the massacre at Amiritsar by the British, at the court of enquiry the commanding officer was asked if he helped the wounded- the few they hadn’t killed.

      He replied ” we would have helped any who applied’

      Great stiff upper lip stuff, that ๐Ÿ™‚

    • Anonymous
      February 16, 2010 at 10:38 am

      [QUOTE=Elmo][B][I]”Sorry, that is one phone number I would not want, so can’t help you with that.”[/I][/B]

      Maybe you could give him Sarah Palin’s number….she likes “Tea” lately….YOU BETCHA! :D[/QUOTE]
      I have her number but she said she was busy looking at maps of countries to see where they are

    • Anonymous
      February 16, 2010 at 11:19 am

      I just had a sweat test and skin biopsy last week to check for autonomic/small fiber neuropathy. I saw that someone mentioned the skin biopsy, and it was no big deal. They take skin from 2 places on your leg, ankle and thigh. It is numbed so no pain. Based on what I have read, the nerve biopsy is more invasive, and people can have residual numbness. I saw someone post something about wanting to hack his foot off because of it, so I would not go that route. ๐Ÿ˜‰

    • Anonymous
      February 16, 2010 at 11:24 am

      [QUOTE=eightplusfive]Hi, Dawn.

      The main diagnostic differentiation between GBS and CIDP is the length of time you get worse — with GBS it’s four to six weeks and then you start getting better; if you continue to worsen after eight weeks it’s CIDP. (That’s not counting subacute, which falls in between.)

      Of course, with all the variants of GBS and CIDP, and the fact that no two of us are alike, and that there’s acute onset CIDP and recurrent GBS, ad nauseum (and yes, there are some because of autonomic nerve damage who have nausea), and the necessity of having to be able to prove unseen symptoms and disabilities through tests, sometimes I don’t wonder that doctors can’t figure it out.

      Ah, but someday Star Trek will come true and they’ll have one of the gadgets that they can run down your body, diagnose exactly what you have, and cure it. I will have died the previous day.

      Keep smiling,

      Deb (the British/American one — or is it American/British?)
      London[/QUOTE]
      You know about 90% of what the average neuro knows, Deb.

      And you’re American / American, I am happy to tell you:) And really helpful too.

    • Anonymous
      February 16, 2010 at 11:44 am

      It was a JOKE, John. Just a bad joke.

      Believe me, I empathize with you and what you’re going through. I, too, am having similar difficulties.

      Neither Americans or Brits are flawless, nor are their histories. I have the utmost respect for you.

      Elmo

    • February 16, 2010 at 1:28 pm

      Well,
      Regarding the Sarah Palin jokes, I am not a fan of her being president or VP. I would say she would probably be a good congress woman or something, but clearly is not at the level of the White House. Neither are the two we have in there now. What she does have the ability to do is connect with the crowd. People who are tired of politics as ussual, dems or repub. My mother often gets mad at me and calls me a woman of the 1800’s, but I really do think that men have a greater command of authority world wide. I am not sure that women should be in the first two positions. You have to admit though, she is cute! You betcha!! Hopefully this is all in fun, no arguments!!! In general I just don’t like what either party is doing, Obama currently and aspects of the Bush presidency as well. So we will have to find a good politics not as usual candidate for the next election!!

    • Anonymous
      February 16, 2010 at 1:52 pm

      [QUOTE=Dawn Kevies mom]Well,
      Regarding the Sarah Palin jokes, I am not a fan of her being president or VP. I would say she would probably be a good congress woman or something, but clearly is not at the level of the White House. Neither are the two we have in there now. What she does have the ability to do is connect with the crowd. People who are tired of politics as ussual, dems or repub. My mother often gets mad at me and calls me a woman of the 1800’s, but I really do think that men have a greater command of authority world wide. I am not sure that women should be in the first two positions. You have to admit though, she is cute! You betcha!! Hopefully this is all in fun, no arguments!!! In general I just don’t like what either party is doing, Obama currently and aspects of the Bush presidency as well. So we will have to find a good politics not as usual candidate for the next election!![/QUOTE]

      deleted post

    • Anonymous
      February 16, 2010 at 2:15 pm

      Perhaps we should all refrain from talking about politics here. Probably a better topic for PM’s. Having been on other boards, I’ve seen “off-topic” discussions about politics, religion, etc., REALLY disrupt boards.
      And, didn’t we just “survive” a major disagreement? Don’t need to fuel another.
      Agree?

    • Anonymous
      February 16, 2010 at 2:16 pm

      [QUOTE=Dawn Kevies mom] My mother often gets mad at me and calls me a woman of the 1800’s, but I really do think that men have a greater command of authority world wide. I am not sure that women should be in the first two positions. QUOTE]

      [I]Hmm? What about Indira Ghandi? Golda Meir? Maggie Thatcher? … to name but a few in more recent times.

      But please let’s not get into the pros and cons of politics. I got a chuckle out of the Sarah phone number posts. But as for who is good, better, best versus rotten, pretty darn awful, or pretty bad … I’d rather not have that a part of CIDP discussion. Religion and politics can only lead to grief in forums. [/I]

    • Anonymous
      February 16, 2010 at 2:20 pm

      true Rocky – we just wandering a bit ๐Ÿ™‚

    • Anonymous
      February 16, 2010 at 2:57 pm

      [QUOTE=ukguytemp]
      And you’re American / American, I am happy to tell you:) And really helpful too.[/QUOTE]

      Greetings, all.

      I feel the need to address a couple of issues here — I don’t want to hijack this thread but I think it needs to be said.

      I’m not American/American — not that I would be insulted to be, but by choice I have dual citizenship. One country is mine by inheritance; the other is mine by my own decision. Both are mine because I take seriously the rights and responsibilities of each country, particularly in terms of electing those whom I believe to be the best to run the individual country and also to help that country deal with its place amongst the nations of the world and the ways in which it can help the other nations.

      In those terms, I recognise not only the good of each country, but also the bad; and in terms of medicine I can see that each — the USA and the UK — has its pros and cons. What those are I won’t attempt to enumerate. But what I will say is that condemning all doctors in one country on the basis of one’s individual experience and esteeming those of another on whatever basis is very biased and for the wrong reasons.

      Doctors at Johns Hopkins or the Mayo or the National London may show signs of being Dr House, but even Dr House is wrong most of the time (note that it takes him an entire episode and the patient has to almost die half-a-dozen times before the good doctor finds the right diagnosis — and in the interim the patient is subjected to numerous expensive tests and is denegrated all the while). And while it would be nice to have a million dollars to pay a doctor to be by one’s side 24/7, Michael Jackson’s 24/7 doctor is now under arrest for contributing to his death.

      Keep fighting,

      Deb
      a citizen of both sides of the Pond and recognising that I’m not making friends on either.

    • Anonymous
      February 16, 2010 at 3:07 pm

      Points taken Deb

      The american/american thing was meant to be a compliment actually:)

    • Anonymous
      February 16, 2010 at 3:25 pm

      [QUOTE=Elmo]Perhaps we should all refrain from talking about politics here. Probably a better topic for PM’s. Having been on other boards, I’ve seen “off-topic” discussions about politics, religion, etc., REALLY disrupt boards.
      And, didn’t we just “survive” a major disagreement? Don’t need to fuel another.
      Agree?[/QUOTE]
      Agreed Elmo and well said

    • February 16, 2010 at 3:37 pm

      What do you guys think about deleting our own posts and just starting over. I was just starting to feel more relaxed and I don’t want someone else to come on and get mad and then we get all crazy again. I deleted mine, but John, you quoted me, so it is still up there. Elmo, good idea that we should drop it!!

    • Anonymous
      February 16, 2010 at 4:29 pm

      Dont know how to delete Dawn, sorry

      But hey, we are all on the same side right ?

      We all under stress I guess and we let off a bit of steam here. I know I do, for which apologies. But its meant in good humour.

      I think we all support each other pretty well. And thanks for being so helpful to me Dawn.

      john

    • Anonymous
      February 16, 2010 at 4:52 pm

      John,

      To delete a post, go into “Edit”; there will be an option to either delete the entire post or edit.

      The “edit” button should appear at the bottom of any of your posts.

      That’s actually a nice feature of this board…others limit editing/deleting to a short time after posting…sometimes as short as 5 minutes! Ouch!!

      Elmo

    • Anonymous
      February 16, 2010 at 4:56 pm

      [QUOTE=Dawn Kevies mom]What do you guys think about deleting our own posts and just starting over. I was just starting to feel more relaxed and I don’t want someone else to come on and get mad and then we get all crazy again. I deleted mine, but John, you quoted me, so it is still up there. Elmo, good idea that we should drop it!![/QUOTE]

      [I]I see no need to delete, Dawn. Some good-natured jostling is probably an unexpected boon in this forum.[/I]

    • Anonymous
      February 16, 2010 at 5:19 pm

      thanks elmo I’ll try

    • February 16, 2010 at 6:50 pm

      Rocky,
      So did you get my pm? I like the new avatar!

    • Anonymous
      February 16, 2010 at 9:10 pm

      [QUOTE=Dawn Kevies mom]Rocky,
      So did you get my pm? I like the new avatar![/QUOTE]

      [I]yes, I did … cute kitty isn’t s/he?[/I] ๐Ÿ™‚

    • Anonymous
      February 16, 2010 at 11:21 pm

      [I]”previously posted by Dawn Kevies mom :

      My mother often gets mad at me and calls me a woman of the 1800’s, but I really do think that men have a greater command of authority world wide. I am not sure that women should be in the first two positions. You have to admit though, she is cute! You betcha!!”[/I]

      WOW… WE’LL NEED MORE THAN A GRAIN OF SALT ON THIS ONE

    • February 17, 2010 at 12:11 pm

      sorry no info

    • Anonymous
      February 17, 2010 at 1:33 pm

      Excellent examples of why politics, religion, and other such issues should stay off the boards…(sigh)

      Please let it go, for all our sakes, k?

    • February 17, 2010 at 2:12 pm

      Elmo check your private message

    • Anonymous
      February 17, 2010 at 2:25 pm

      Nothing there, Dawn, at least not yet.

    • Anonymous
      February 17, 2010 at 4:25 pm

      [FONT=”System”]I agree with you whole-heartedly about keeping politics and religion off of a discussion board meant to address matters regarding GBS and CIDP. What bothers me is that somehow it is A-Okay to give one’s opinion on these subjects and upon dissension, somehow want to just take it all back. I happen to be an advocate for women’s rights as is my wife; I am floored not only by comments made against women, but more by the fact that they were made by one. It is offensive and if I am to understand the deletion of the Cytoxan post, offensiveness is enough here to warrant censorship; which is essentially the antithesis of open dialog, democracy and our 1st amendment rights.

      When my dear wife read what Dawn wrote, she was speechless, as was I. Whether it be Sarah Palin commentary or anti-Obama-ism, beliefs regarding which gender should have worldwide command and whether women should serve in the White House – this discussion does not belong here nor does one get to just take it all back. Then, after it is brought forth openly, the PM’s begin flying by being announced on the main forum (i.e. for the “in” group to discuss).

      Perhaps the “in” group should exchange personal phone numbers, emails and so forth so that all the rest do not have to be privy to the goings on of the secretive dialog. I do not hold you responsible Elmo but I am speaking to you as you have repeatedly expressed a desire to keep peace.

      Since most people in the world who “are in command” are white/caucasian, I wonder if the same sentiment applies to people of African descent; that is to say, should they too not be in the “first two positions?”

      Dawn: Please stick to your claim that you are “just a mom trying to help her child.” Your commentary on politics and utterances regarding women are misplaced here.

      Regarding the deletion of Pam H’s Cytoxan post – how shameful that she was unable to express her personal story and opinion. What a loss for those who may have learned from it, that now will not, simply because of a few people’s insecurity. This forum should not be anyone’s life![/FONT]

    • Anonymous
      February 17, 2010 at 4:59 pm

      Glynn,

      First, I want to apologize…to you and everyone else. John and I started going down that political path as a joke, others followed, and I knew it was going to offend someone. So, I apologize for “getting the ball rolling” so to speak. I’ll be more careful in the future.

      As to your referrals to free speech, etc., I’ve seen them before on other boards. This site, like every other, is privately owned, and the owners have every right to limit what they feel is offensive or inappropriate speech. Doesn’t matter what it is, if they feel it distracts from the purpose, it’s their board and they can shut it down. If we, as users, don’t like it, I guess we can go elsewhere, or start our own forum.

      I also don’t understand what the issue is with PM’s. In this case, I was called to task for my role in all of this…nothing else. I appreciate that it was said privately. To be factual, the post where I realized this was going the wrong way, and asked that we stop, was BEFORE you ever posted, not as a result of your post, as you seem to indicate. You’re welcome to check the thread on that.

      Again, my apologies for initiating it; I DO believe that this board is very important, and I’m sorry that time has to be wasted on issues like this, instead of helping people.

      Elmo

    • Anonymous
      February 17, 2010 at 5:35 pm

      Hi Elmo

      I think we all getting a bit hysterical about this, unnecessarily. I keep saying we all on the same side ie us against disease.

      I feel a bit of off topic debate is fine; we may be sick but we are not just sick people. A bit of human interest does lighten the darkness of illness too. Makes us 3 dimensional and not just a case history of symptoms.

      In any case, I think you’re OK elmo:)

      john

    • Anonymous
      February 17, 2010 at 5:37 pm

      [I]No apology necessary from you, Elmo. Good natured fun is a welcome escape from some of the seriousness here … until, of course, it is hijacked.[/I]

    • Anonymous
      February 17, 2010 at 6:03 pm

      John – To get back to what the thread was REALLY about…

      I do hope you get some answers soon. I know how difficult it is being left in limbo. We were fortunate enough to get a GBS diagnosis after Emily was in the hospital for 2 days. But I spent MONTHS trying to get someone to listen to what I had to say about her pain & her tripping.

      Emily now has a neuro who doesn’t really know too much about CIDP but listens to me & has been open to what I can teach him. I’m hoping you are lucky enough to find a neuro who will at least do that for you.

      Kelly

    • Anonymous
      February 17, 2010 at 7:00 pm

      [QUOTE=Elmo]Since we’re quoting Jack Nicholson, thought I’d add my favorite, from “The Bucket List”…

      As he finishes puking his guts out from chemo, he looks into the bathroom mirror and proclaims, “Somewhere, some lucky S.O.B. is dying of a heart attack right now”. ๐Ÿ™‚

      Perspective. It’s all a matter of perspective.
      Elmo[/QUOTE]

      [I]I just saw this post, Elmo … GREAT movie … buddy movie, illegitimati non carborundum ( as our illustrious Senator Goldwater had instead of a nameplate on his desk ) movie, and, in the end and in all, a feel good movie.[/I]

      [I]P.S. Didn’t hurt that it had a couple charismatic actors, either.[/I]

    • Anonymous
      February 17, 2010 at 7:04 pm

      Thanks Kelly

      My other, better GP is now sending me to a haematologist cos i might have paroxysmal nocturnal haemoglobinuria, which may indeed account for my neuro symptoms. God knows.

      Actually I found this possibility myself.

      I feel I am now equivalent to a 3rd year med student ! Probably better.

      Glad you found a listening neuro. But maybe you should ask him who DOES know a lot about CIDP. And you’re teaching him ? This aint right.

      I posted sometime ago about Drs and how variable they are. There’s a lot of politics in medicine, sadly. Their agendas are not often about putting patients first. They have the same power that priests had in the dark ages.

      That’s why I think discussions about politics is very germane to this health board, cos in the end, its all about politics, national and medical in terms of who gets treated by whom, at what cost and who controls the supply of Drs, their training and how they share information- or not. Clearly, one of the things that keeps popping up on this board is ‘who’s a good Dr to see who knows about this’ . Well, why cant the medical profession tell you that, because they do know. Or if they don’t, then they aren’t organised properly so they can tell you.

      Phew ๐Ÿ™‚

      Good luck !

      John

      Good luck

      John

    • Anonymous
      February 17, 2010 at 7:11 pm

      [QUOTE=Rocky36][I]I just saw this post, Elmo … GREAT movie … buddy movie, illegitimati non carborundum ( as our illustrious Senator Goldwater had instead of a nameplate on his desk ) movie, and, in the end and in all, a feel good movie.[/I]

      [I]P.S. Didn’t hurt that it had a couple charismatic actors, either.[/I][/QUOTE]
      Very good post Rocky!

      illegitimati non carborundum LOL – but they do don’t they ๐Ÿ™‚

    • Anonymous
      February 17, 2010 at 7:13 pm

      [QUOTE=ukguytemp]
      I dont want nerve biopsy – they can bloody well work out wat I have got without that ~[/QUOTE]

      [I]Don’t write that off altogether. Some people have no problems with nerve biopsies … some people do. But all live through it quite nicely and if it helps in a definitive diagnosis …

      My neuro does say to be careful who does the biopsy as the specimen can so easily be ruined and any results whopperjawed. She used to read nerve biopsy specimens at Johns Hopkins and though she is a very lovely and demure and religiously oriented woman, she can hardly contain herself when she mentions the grossly ruined specimens.[/I]

    • Anonymous
      February 17, 2010 at 7:21 pm

      [QUOTE=Rocky36][I]Don’t write that off altogether. Some people have no problems with nerve biopsies … some people do. But all live through it quite nicely and if it helps in a definitive diagnosis …

      My neuro does say to be careful who does the biopsy as the specimen can so easily be ruined and any results whopperjawed. She used to read nerve biopsy specimens at Johns Hopkins and though she is a very lovely and demure and religiously oriented woman, she can hardly contain herself when she mentions the grossly ruined specimens.[/I][/QUOTE]
      that’s encouraging Rocky ! Same thing about knowing who’s good at what, over and over again.

      They don’t like being interviewed with questions like ‘ Have you messed up this procedure before and dropped the sample on the floor?’

    • Anonymous
      February 17, 2010 at 7:22 pm

      [QUOTE=ukguytemp]Clearly, one of the things that keeps popping up on this board is ‘who’s a good Dr to see who knows about this’ . Well, why cant the medical profession tell you that, because they do know.
      John

      [I]a few probable answers …

      for one, docs specialize so an internal med doc won’t be up-to-date on all things neuro … and vice versa

      but the biggie … ethics

      and a couple things there …

      for one, docs cannot be seen as pushing the practice of any particular doc, which is why they might give you 3 names ( the usual practice before I retired ) …

      for another, send a patient to a specific doc and things go sour, guess who gets sued?

      Rocky[/I]

    • Anonymous
      February 17, 2010 at 7:44 pm

      yes good points Rocky BUT, I see no problem with Drs having a list of all their sub-speciaities centralised and their being able to just read off the names.

      They have international journals, conferences etc – this is entirely do-able.

      As for legal problems I dont see an issue. All they are saying is ‘this guy treats a lot of patients with xyz and is listed as having an interest in those diseases, up to you to go see them and see what you think. But of course the best thing would be patient testimonials in addition. There you might have legal problems but in the UK we are moving towards that. You can actually write comments about GPs on the NHS website.

      Any reduction in the power of Drs to be completely autonomous will be resisted, but its needed. Successive British governments have tried to get Drs to be more open but its a hard struggle. But they are winning slowly.

      One of the things the UK gov has tried to do is to publish peri-operative death rates, for example, but the Drs argue their case loads are different. Yes up to a point but they can still be compared.

      We had a case of a heart surgeon killing a lot of babies and it was very difficult to get to him. Not to mention Dr Harold shipman – google him -it will shock you. Most prolific serial killer in UK history. He got away with it for over 30 years. The private cosmetic surgery business here is a mess too.

      I’d like the same information about pilots too ๐Ÿ™‚

    • Anonymous
      February 17, 2010 at 8:51 pm

      Hey John – We’re sticking with this neuro because he listens to what we have to say. If I tell him Emily has a pain he actually listens & cares. If I tell him I’m nervous about something he will take the time to listen to me & discuss it. He doesn’t want to put Emily through any unnecessary testing.

      We went to one of the top pediatric CIDP dr’s around here. She worked through the Muscular Dystrophy Association (MDA). She wanted to put Emily on methotrexate (which is a chemo drug) when Emily was 4 years old. When I declined that she convinced me to put Emily on steroids. She then stopped the IVIG (which Emily was getting once a week at that point) and every time Emily relapsed she increased the steroid dose, which would then make her relapse again.

      Emily went from relapsing every 12 days to every 9 days while on her highest dose of steroids. At that point I told the dr I wanted her off of the steroids & the dr refused & wanted to increase them again.

      The MDA dr also wanted to do an EMG/NCV on Emily, again at 4 years old, every 2 months.

      We decided to go back to the neuro who doesn’t know much about CIDP but cares about Emily.

      I try to stay up on the latest & greatest treatments for CIDP. I designed Emily’s treatment plan & so far it’s worked really well. She went from 200 grams of IVIG a month (at 35 lbs) to 20 grams of IVIG every 3 weeks (now at 67 lbs). She looks just like a normal girl now.

      I found, in our case, the dr’s that knew the most were less likely to actually care about Emily. They just wanted to use her as their guinea pig & to prove themselves to each other. They only wanted to do treatments they were familiar with but Emily isn’t a typical CIDP’er. They had never seen a child present the way Emily did & they weren’t willing to adapt the treatment program to her specifically. And, like is said here all the time, treating CIDP is an art form because every CIDP’er is different.

      I googled “paroxysmal nocturnal haemoglobinuria” & it sounds pretty serious. I really hope you don’t have it. Do you have red urine? That would be pretty scary!

      And the reason why there is so much politics in health care is because politicians make too much money (from campaign contributions) from health care companies. By the time anyone is elected to an office that matters they have already sold their soul 3 or more times to get there.

      Kelly (hoping my little political contribution to the discussion doesn’t get me bashed)

    • Anonymous
      February 17, 2010 at 9:47 pm

      [QUOTE=Emily’s_mom]
      And the reason why there is so much politics in health care is because politicians make too much money (from campaign contributions) from health care companies. By the time anyone is elected to an office that matters they have already sold their soul 3 or more times to get there.

      Kelly (hoping my little political contribution to the discussion doesn’t get me bashed)[/QUOTE]

      [I]Nope. Couldn’t agree more. Obscene profit margins in the health insurance industry and now in the HMO industry. Am I jaded? Sure. I spent 30+ years working in the medical field … from the time of the Dr. Welby types to what we have today. Pretty depressing.[/I]

    • February 18, 2010 at 12:40 am

      Money is why I think my worms were burried (pun intended) deep in a usda.gov site with important information regarding their success!! If more people started finding out about my worms, the drug companies would be in trouble. The abstract should have been in the fda section or maybe even cdc. I am also perplexed how these naturopaths know about the entire body and how it works and fails as a whole and western medicine feels the need to shuffle us around from doc to doc complaint by complaint. While I appreciate their candor in admitting they do not know about a particular issue, it does make it difficult going from doc to doc. There is another post about ldn that Erin started. You should check it out it is very interesting.

    • Anonymous
      February 18, 2010 at 4:48 am

      hi dawn

      Dreadful account of the Drs. You’re right to have one you like, or is taking you seriously. but i’d still see if u can find yet another.

      I do have dark urine in the morning, but full blood count is normal. so its a possibility.

      i really dont know yet

    • Anonymous
      February 18, 2010 at 5:37 pm

      sorry Kelly

      I addressed my post to Dawn but should have been to you

      john

    • Anonymous
      February 18, 2010 at 6:16 pm

      That’s ok. Apparently Dawn & I are pretty much interchangeable these days:D

      (It’s a joke!)

      I really hope you get some answers soon. Like I said before, being in limbo SUCKS!

      Kelly

    • Anonymous
      February 18, 2010 at 6:38 pm

      [QUOTE=Emily’s_mom]That’s ok. Apparently Dawn & I are pretty much interchangeable these days:D

      (It’s a joke!)

      I really hope you get some answers soon. Like I said before, being in limbo SUCKS!

      Kelly[/QUOTE]
      LOL

      Yes, it must be a terrible worry for you Kelly but u doing all the right things

    • February 18, 2010 at 9:21 pm

      Well,
      If I had to be interchangeable with someone here, it would be you!:D

    • Anonymous
      February 18, 2010 at 9:40 pm

      Awwww, you are SUCH a sweetheart Dawn!

      And to think, the first time I posted to you – you hated me, LOL. We’ve come a LONG way my friend.

      Alright love fest is over! I just can’t take it. LOL!

      Kelly

    • Anonymous
      February 18, 2010 at 9:59 pm

      Sorry all…it’s been a rough few days…I know I have some replies to send. I’ll be spending a lot of time in airports this weekend, so hopefully I can catch up.

      Did some research on the neuro I’m seeing next week. I’m kind of hopeful; learned that she teaches in the Neuro department at the U of Utah. I hope that means she’ll be a little more up-to-date on things, and a little more open-minded. ‘Course, I could be sorely disappointed, too.
      I have to get some relief and support, though; I don’t know how much longer I can keep working without either some treatment, or at least encouragement!

      Elmo

    • Anonymous
      February 19, 2010 at 7:00 am

      Good luck Elmo

      How did you find the new neuro? was it a recommendation?

      John

    • Anonymous
      February 19, 2010 at 10:43 am

      Elmo – I’m so sorry you are having a rough time. I’m sure the stress of traveling isn’t making it any easier.

      I’ll say a prayer that the new neuro will be able to offer you some insight, help & lots of answers.

      Kelly

    • Anonymous
      February 19, 2010 at 11:49 am

      Thanks, guys!

      John, I found this one via my insurance and a lot of phone calls. The U of Utah Neuro Dept is supposed to be one of the best in the nation, but they don’t take my insurance. Get this…they’re in the University system, thus subsidized by the state. My wife, who’s the “insured party” is a teacher, and thus, a state employee…or at least covered by state retirement and health benefits. BUT, the top neuro clinic IN the state, subsidized BY the state, will not treat STATE employees!! Seem ironic, if not “criminal” to you??

      Anyway, this doc teaches up there, and has served a fellowship in their department, but works out of a highly respected clinic that is associated with my insurance.

      So, we’ll see. Thanks again for your thoughts and prayers.

      Elmo

    • February 19, 2010 at 12:24 pm

      Sending encouragement your way Elmo. Maybe with the help of God she will give an l/p and follow w/ivig if the results so warrant. At least no storms to get in the way with your travels this weekend!

    • Anonymous
      February 19, 2010 at 12:43 pm

      Thanks, Dawn. Actually, I cancelled my travel plans. I was planning to go to my uncle’s funeral in Wisconsin, but decided it wasn’t a good idea. I’ve actually been having second thoughts all week, since I’ve not been doing very well physically, and knew the stress of the weekend would make it worse. Between the emotional aspects, the reduced sleep aspects, and already feeling like I’m in a “flare”…I finally gave in to my “little voice”. You know the one…the voice you hear in your head right before you do something stupid…or at least, I do. The one that typically is saying, (in a long drawn out voice)…”I don’t know about this….”. You know, THAT one. Kinda sounds like my wife’s voice, now that I think about it… ๐Ÿ˜€

      So, I made a few calls, expressed my regrets and condolensces, and am going to stay home and try and take it easy this weekend. Hope it helps!

      Thanks again!

      Elmo

    • Anonymous
      February 19, 2010 at 6:47 pm

      [QUOTE=Elmo]Thanks, guys!

      John, I found this one via my insurance and a lot of phone calls. The U of Utah Neuro Dept is supposed to be one of the best in the nation, but they don’t take my insurance. Get this…they’re in the University system, thus subsidized by the state. My wife, who’s the “insured party” is a teacher, and thus, a state employee…or at least covered by state retirement and health benefits. BUT, the top neuro clinic IN the state, subsidized BY the state, will not treat STATE employees!! Seem ironic, if not “criminal” to you??

      Anyway, this doc teaches up there, and has served a fellowship in their department, but works out of a highly respected clinic that is associated with my insurance.

      So, we’ll see. Thanks again for your thoughts and prayers.

      Elmo[/QUOTE]
      Hi Elmo

      Its bad enough trying to find neuros without all the hassle of battling insurance companies.

      How does it go? ” A government by the people and for the people” something like that. Yeah right !

      But good luck Elmo

    • Anonymous
      February 20, 2010 at 9:01 am

      Elmo,

      Have been reading all of your post.

      Hope you get good results with the new

      neuro that gets you on the path to feeling better.

      That “little voice” in the head gives good advice.

      My husband would agree that it sounds like the wife.

      Good luck to you.

      Shirley

    • Anonymous
      February 20, 2010 at 3:21 pm

      Thanks, Shirley!

      John,

      It’s ” a government of the people, by the people, and for the people”. And it is, if we’d only make use of it.

      It consistantly amazes me that the USA is touted as the best example of a “democratic” society, yet we have the lowest voter turn-out of any nation in the world. If people would actually participate in the process, it could be all that the founders anticipated. But, when only 30-40% of the people vote, problems arise.

      My motto has always been, “If you don’t vote, you have no right to complain!”.

      Elmo

    • Anonymous
      February 20, 2010 at 3:47 pm

      “If you don’t vote, you have no right to complain!”.

      Absolutely!

      Deb
      London

    • Anonymous
      February 20, 2010 at 5:20 pm

      [QUOTE=Elmo]Thanks, Shirley!

      John,

      It’s ” a government of the people, by the people, and for the people”. And it is, if we’d only make use of it.

      It consistantly amazes me that the USA is touted as the best example of a “democratic” society, yet we have the lowest voter turn-out of any nation in the world. If people would actually participate in the process, it could be all that the founders anticipated. But, when only 30-40% of the people vote, problems arise.

      My motto has always been, “If you don’t vote, you have no right to complain!”.

      Elmo[/QUOTE]
      You’re right elmo

      The highest turn out in UK was 72% in 1997. Blair was elected on 43% of the vote so only about 28% of the electorate. He aint be a great success, except for himself.

      But voters are not as powerful as lobbyists. In any case, as Noam Chomsky says, its all about ‘manufacturing consent’. There is only an illusion of democracy.

      Basically, the people cannot be trusted with government; that is the view of the ruling elite.

    • Anonymous
      February 20, 2010 at 5:35 pm

      actually, its the same view some Drs have; ‘patients cant be trusted’ either.