Another new person here.
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AnonymousFebruary 2, 2007 at 10:07 am
Hello to everyone.
I’ve been reading your posts and trying to understand my new diagnosis. I am 36 years old and have been mostly healthy. I have yet to meet anyone that knows what CIDP is. I live in Nebraska.
I feel very fortunate that I am not as bad as so many of you and am so sorry to read some of these stories.
I was dx’d with CIDP in Sept 06 after complaining to my primary dr for a year that something was wrong with my foot. I cant lift it easily or make a complete cirlce and my toes dont move. I was first told to try strength exercises. I cant walk far without feeling like I’ll trip at any time and always need a grocery cart at the store. Eventually when both feet were getting equally numb, I was sent to a nuero.
I had the EMG, extensive bloodwork and the spinal tap. The spinal tap was so horribley painful, I never want that again !
I’ve had two EMG’s and recently requested a copy of my medical records.
It’s scarey to read some of the results when the EMG shows “no response recorded”.
I’ve had two IVIG tx three times now each five days in a row. I didnt notice much improvement but the dr said there was some very slight. I guess at first there was some tingling that wasnt there before but it didnt last. He hasnt done the prednisone other than while I am having the IVig to ward off headaches.
I’m over due to go back and get in for more IVig and plan to get things in the works next week. I do like my nuero very much and feel that he has been thorough.
But, still, I’m in denial that this is really what I have and wonder if maybe it isnt so. Like I said, I dont have the severity that many others here do. My feet are numb and I cant move my toes on either foot. But, I can walk. My hand tingled for a while but that is gone now. I do notice lack of strength in my legs as it is very hard for me to carry my 4 yr old son and I can no longer carry him up stairs in our home. How this affecting my abilties or disbilities when it comes to playing and running with my child hurts me like no other. I do notice that I am very tired all of the time. It’s really hard when nobody understands. I try not to show that I am so tired so often b/c I have a busy life and everyone will just think I am lazy.I wonder if this is hereditary ? My aunt died at age 66 from ALS and that has been ruled out for me. Is there any connection between the two ? How long does it progress ? Do I really need the
expensive Ivig ?any help or advice would be appreciated.
Peace to all. -
AnonymousFebruary 2, 2007 at 11:39 am
First of all WELCOME!!!
I Have CIDP and i am fixing to have my second IVIG. I am sorry you have not felt better after two. I did after one. I have a test: sit in a chair, ankles and knees together, cross arms and then try to stand up. I could not do this for many years and after 4 days of treatment i could. That has been 6 weeks now and i tried my test yesterday and i can’t stand without using my arms. I am so tired and legs have a dragging feeling, so i know it is time for another treatment. Maybe this brand of IVIG your getting is not right for you. I don’t know alot about that but there are plenty of ppl on here that do that can help you on that.
I know how you feel about ppl thinking you might be lazy! I used to feel guilty when my family had to do things around the house while i lay there and watch. At the beginning of my illness my son said i don’t even try to do some of the things, he said how do you know that you can’t so them unless you try. Which makes sense but i know my body and it tells me to rest and not to try to take a shower and go to the big family birthday party. I ordered the new DVD about CIDP on this site and made my family watch it, and after that along with my IVIG treatment they are understanding alot better.
Good luck with everything and again, welcome!! -
AnonymousFebruary 2, 2007 at 3:23 pm
Hi there. It will take some time for you to really feel a difference from the IVIG. Hopefully he/she will put you on a regular schedule 2/4/6 weeks whichever they feel is best. Also perhaps Prednisone, sometimes it takes a combination of things to get the best results. Lack of strength is a HUGE issue for us as we recover. I don’t know that much about ALS except the basics, but I believe it is Autoimmune as is CIDP/GBS. It is believed that the predisposition for Autoimmune diseases is hereditary, my family being an example of multiple people/multiple illnesses.
Keep coming back and asking questions and welcome to the family.
Jerimy
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AnonymousFebruary 2, 2007 at 5:00 pm
Hi there!
I wanted to tell you to give the IVIG a chance to work. When Emily (4 years old at the time) was first dx’d she received 2 doses of IVIG over 2 days. By the time we came home from the hospital on the second day she was climbing all over the place & jumping. When we went to the hospital 4 days earlier she could hardly walk. We call it our miracle drug.
Once you get a good loading dose & the dr can figure out when you are relapsing you will be put on a maintenance dose. It differs for some people. In the beginning Emily needed IVIG 2 times a week to keep her right eye from becoming paralyzed. Now she can go 12 days without it getting bad!
Just make sure that the MOMENT you feel that you are starting to decline that you get back to the dr & tell him/her so they can order the IVIG treatments. I can’t tell you how important it is to catch it before you are on the downslide. It takes so much more to get going back up again.
I know it’s hard to accept that this is going to be your life but it will be OK. CIDP is treatable & it sounds like you caught the disease before it spread to other parts of your body.
Take care,
Kelly -
AnonymousFebruary 2, 2007 at 5:01 pm
I come from a huge family, with over 45 first cousins, & not one other person has ever had any type of autoimmune illness. My neuro told me that CIDP is not hereditary. If you didn’t notice much improvement from the IVIG then it is possible that you might have the progressive form of this illness. Not to scare you, but it seems that those who have the relapsing/remitting form are the people who do the best on IVIG. Not that you don’t need it, as it does tend to halt the progression of the illness.
I am sorry you have a child so young; my youngest of 3 was 21 when I came down with CIDP. I had already had the pleasure of teaching my children to ski, skate, play tennis, etc. As for the fatigue, there really isn’t much you can do about it, we all seem to have it, just get as much rest as you can. And don’t push yourself, you will only suffer more for it later.
Pam -
AnonymousFebruary 2, 2007 at 8:40 pm
I can understand how frustrating and scary this whole thing must be. Sometimes I just feel like crawling into a hole and give up struggling but that wouldn’t work. So I live my life as best as I can. Like you my symptoms don’t appear to be as serious as they are for many others and most of all I have no pain. What bothers me the most is that the 6 year downward spiral will probably continue ending up in a wheelchair. IVIG seems to be helping some but not as much as I would like. This probably is because I have a variant of CIDP, antiMAG IgM.
I am surprised the spinal tab was so painful for you. My neuro told me she was using the smallest needle she had available which would make it take longer. It didn’t hurt at all. But you probably won’t need another one.
Hang in there.
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AnonymousFebruary 2, 2007 at 10:25 pm
Welcome. There is alot of good information and the opportunity to hear similar experiences help to make it a little easier to understand what’s happening. My CIDP is not to bad. I am still able to do most things, but not as well. Accepting less is not one of my strongsuits and I probably push too hard. The fatigue is one of the hardest things to manage and to get others to understand.
I have had IViG done in 2 different methods. First was 2x week for 2weeks and then 1x every other week for 6 more infusions. Now I get it 3x in 3 days every 6weeks and that seems to have better results. The right “recipe” is different for each doctor and each patient.
Good Luck and Godspeed. -
AnonymousFebruary 3, 2007 at 12:25 am
[FONT="]Pam, not to correct you but I want to add to this topic. I just wanted to clarify what I said earlier about heredity and Autoimmunity, and where I got my information from.
[/FONT][B][FONT="]From:[/FONT][/B][FONT="] aarda.org/infocus_article.php?ID=19[/FONT]
[FONT="]
[COLOR=#666666]“What could cause the immune system to misfire in such a harmful manner? Part of the answer is genetic. All of the autoimmune diseases show evidence of a genetic predisposition. No single gene by itself causes an autoimmune disease; instead, a coalescence of several genes in certain individuals, in the aggregate, heightens significantly the overall possibility of developing an autoimmune disease. Some of these genes may be specific for a certain disease, but others predispose to autoimmunity in general. That explains why a single patient may have more than one autoimmune disease or why autoimmune diseases are more common in some families than others.”[/COLOR][/FONT] -
AnonymousFebruary 3, 2007 at 12:26 am
[B][FONT="]From: [/FONT][/B][FONT="][I]aarda.org/research/research_display.php?ID=47[/I]
[/FONT] [CENTER][CENTER][SIZE=3][B][COLOR=black][FONT="]List of Autoimmune Related Diseases[/FONT][/COLOR][/B][/SIZE][/CENTER]
[/CENTER]
[COLOR=Black][B][I][FONT="]A comprehensive list of autoimmune diseases[/FONT][/I][/B][/COLOR]
[COLOR=black][FONT="]Acute necrotizing hemorrhagic leukoencephalitis [/FONT][/COLOR]
[COLOR=black][FONT="]Addison’s disease [/FONT][/COLOR]
[COLOR=black][FONT="]Agammaglobulinemia [/FONT][/COLOR]
[COLOR=black][FONT="]Allergic asthma [/FONT][/COLOR]
[COLOR=black][FONT="]Allergic rhinitis [/FONT][/COLOR]
[COLOR=black][FONT="]Alopecia areata [/FONT][/COLOR]
[COLOR=black][FONT="]Amyloidosis [/FONT][/COLOR]
[COLOR=black][FONT="]Ankylosing spondylitis [/FONT][/COLOR]
[COLOR=black][FONT="]Anti-GBM/Anti-TBM nephritis [/FONT][/COLOR]
[COLOR=black][FONT="]Antiphospholipid syndrome (APS) [/FONT][/COLOR]
[COLOR=black][FONT="]Autoimmune aplastic anemia [/FONT][/COLOR]
[COLOR=black][FONT="]Autoimmune dysautonomia [/FONT][/COLOR]
[COLOR=black][FONT="]Autoimmune hepatitis [/FONT][/COLOR]
[COLOR=black][FONT="]Autoimmune hyperlipidemia [/FONT][/COLOR]
[COLOR=black][FONT="]Autoimmune immunodeficiency [/FONT][/COLOR]
[COLOR=black][FONT="]Autoimmune inner ear disease (AIED) [/FONT][/COLOR]
[COLOR=black][FONT="]Autoimmune myocarditis [/FONT][/COLOR]
[COLOR=black][FONT="]Autoimmune thrombocytopenic purpura (ATP) [/FONT][/COLOR]
[COLOR=black][FONT="]Axonal & neuronal neuropathies [/FONT][/COLOR]
[COLOR=black][FONT="]Baló disease [/FONT][/COLOR]
[COLOR=black][FONT="]Behçet’s disease [/FONT][/COLOR]
[COLOR=black][FONT="]Bullous pemphigoid [/FONT][/COLOR]
[COLOR=black][FONT="]Cardiomyopathy [/FONT][/COLOR]
[COLOR=black][FONT="]Castleman disease [/FONT][/COLOR]
[COLOR=black][FONT="]Celiac sprue (nontropical) [/FONT][/COLOR]
[COLOR=black][FONT="]Chagas’ disease [/FONT][/COLOR]
[COLOR=black][FONT="]Chronic fatigue syndrome** [/FONT][/COLOR]
[COLOR=black][FONT="]Chronic inflammatory demyelinating polyneuropathy (CIDP) [/FONT][/COLOR]
[COLOR=black][FONT="]Churg-Strauss syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Cicatricial pemphigoid/benign mucosal pemphigoid [/FONT][/COLOR]
[COLOR=black][FONT="]Crohn’s disease [/FONT][/COLOR]
[COLOR=black][FONT="]Cogan’s syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Cold agglutinin disease [/FONT][/COLOR]
[COLOR=black][FONT="]Congenital heart block [/FONT][/COLOR]
[COLOR=black][FONT="]Coxsackie myocarditis [/FONT][/COLOR]
[COLOR=black][FONT="]CREST disease [/FONT][/COLOR]
[COLOR=black][FONT="]Essential mixed cryoglobulinemia [/FONT][/COLOR]
[COLOR=black][FONT="]Demyelinating neuropathies [/FONT][/COLOR]
[COLOR=black][FONT="]Dermatomyositis [/FONT][/COLOR]
[COLOR=black][FONT="]Devic disease [/FONT][/COLOR]
[COLOR=black][FONT="]Discoid lupus [/FONT][/COLOR]
[COLOR=black][FONT="]Dressler’s syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Endometriosis [/FONT][/COLOR]
[COLOR=black][FONT="]Eosinophilic fasciitis [/FONT][/COLOR]
[COLOR=black][FONT="]Erythema nodosum [/FONT][/COLOR]
[COLOR=black][FONT="]Experimental allergic encephalomyelitis [/FONT][/COLOR]
[COLOR=black][FONT="]Evan’s syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Fibromyalgia** [/FONT][/COLOR]
[COLOR=black][FONT="]Fibrosing alveolitis [/FONT][/COLOR]
[COLOR=black][FONT="]Giant cell arteritis (temporal arteritis) [/FONT][/COLOR]
[COLOR=black][FONT="]Goodpasture’s syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Graves’ disease [/FONT][/COLOR]
[COLOR=black][FONT="]Guillain-Barré syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Hashimoto’s disease [/FONT][/COLOR]
[COLOR=black][FONT="]Hemolytic anemia [/FONT][/COLOR]
[COLOR=black][FONT="]Henoch-Schonlein purpura [/FONT][/COLOR]
[COLOR=black][FONT="]Herpes gestationis [/FONT][/COLOR]
[COLOR=black][FONT="]Hypogammaglobulinemia [/FONT][/COLOR]
[COLOR=black][FONT="]Idiopathic thrombocytopenic purpura (ITP) [/FONT][/COLOR]
[COLOR=black][FONT="]IgA nephropathy [/FONT][/COLOR]
[COLOR=black][FONT="]Immunoregulatory lipoproteins [/FONT][/COLOR]
[COLOR=black][FONT="]Inclusion body myositis [/FONT][/COLOR]
[COLOR=black][FONT="]Insulin-dependent diabetes (type1) [/FONT][/COLOR]
[COLOR=black][FONT="]Interstitial cystitis [/FONT][/COLOR]
[COLOR=black][FONT="]Juvenile arthritis [/FONT][/COLOR]
[COLOR=black][FONT="]Juvenile diabetes [/FONT][/COLOR]
[COLOR=black][FONT="]Kawasaki syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Lambert-Eaton syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Leukocytoclastic vasculitis [/FONT][/COLOR]
[COLOR=black][FONT="]Lichen planus [/FONT][/COLOR]
[COLOR=black][FONT="]Lichen sclerosus [/FONT][/COLOR]
[COLOR=black][FONT="]Ligneous conjunctivitis [/FONT][/COLOR]
[COLOR=black][FONT="]Linear IgA disease (LAD) [/FONT][/COLOR]
[COLOR=black][FONT="]Lupus (SLE) [/FONT][/COLOR]
[COLOR=black][FONT="]Lyme disease [/FONT][/COLOR]
[COLOR=black][FONT="]Meniere’s disease [/FONT][/COLOR]
[COLOR=black][FONT="]Microscopic polyangiitis [/FONT][/COLOR]
[COLOR=black][FONT="]Mixed connective tissue disease (MCTD) [/FONT][/COLOR]
[COLOR=black][FONT="]Mooren’s ulcer [/FONT][/COLOR]
[COLOR=black][FONT="]Mucha-Habermann disease [/FONT][/COLOR]
[COLOR=black][FONT="]Multiple sclerosis [/FONT][/COLOR]
[COLOR=black][FONT="]Myasthenia gravis [/FONT][/COLOR]
[COLOR=black][FONT="]Myositis [/FONT][/COLOR]
[COLOR=black][FONT="]Narcolepsy [/FONT][/COLOR]
[COLOR=black][FONT="]Neutropenia [/FONT][/COLOR]
[COLOR=black][FONT="]Ocular cicatricial pemphigoid [/FONT][/COLOR]
[COLOR=black][FONT="]Osteoarthritis [/FONT][/COLOR]
[COLOR=black][FONT="]Palindromic rheumatism [/FONT][/COLOR]
[COLOR=black][FONT="]Paraneoplastic cerebellar degeneration [/FONT][/COLOR]
[COLOR=black][FONT="]Paroxysmal nocturnal hemoglobinuria (PNH) [/FONT][/COLOR]
[COLOR=black][FONT="]Parsonnage-Turner syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Pars planitis (peripheral uveitis) [/FONT][/COLOR]
[COLOR=black][FONT="]Pemphigus [/FONT][/COLOR]
[COLOR=black][FONT="]Peripheral neuropathy [/FONT][/COLOR]
[COLOR=black][FONT="]Perivenous encephalomyelitis [/FONT][/COLOR]
[COLOR=black][FONT="]Pernicious anemia [/FONT][/COLOR]
[COLOR=black][FONT="]POEMS syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Polyarteritis nodosa [/FONT][/COLOR]
[COLOR=black][FONT="]Type I, II, & III autoimmune polyglandular syndromes [/FONT][/COLOR]
[COLOR=black][FONT="]Polymyalgia rheumatica [/FONT][/COLOR]
[COLOR=black][FONT="]Polymyositis [/FONT][/COLOR]
[COLOR=black][FONT="]Postmyocardial infarction syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Postpericardiotomy syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Progesterone dermatitis [/FONT][/COLOR]
[COLOR=black][FONT="]Primary biliary cirrhosis [/FONT][/COLOR]
[COLOR=black][FONT="]Psoriasis [/FONT][/COLOR]
[COLOR=black][FONT="]Psoriatic arthritis [/FONT][/COLOR]
[COLOR=black][FONT="]Idiopathic pulmonary fibrosis [/FONT][/COLOR]
[COLOR=black][FONT="]Pyoderma gangrenosum [/FONT][/COLOR]
[COLOR=black][FONT="]Pure red cell aplasia [/FONT][/COLOR]
[COLOR=black][FONT="]Raynaud’s phenomenon [/FONT][/COLOR]
[COLOR=black][FONT="]Reflex sympathetic dystrophy [/FONT][/COLOR]
[COLOR=black][FONT="]Reiter’s syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Relapsing polychondritis [/FONT][/COLOR]
[COLOR=black][FONT="]Restless legs syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Rheumatic fever [/FONT][/COLOR]
[COLOR=black][FONT="]Rheumatoid arthritis [/FONT][/COLOR]
[COLOR=black][FONT="]Sarcoidosis [/FONT][/COLOR]
[COLOR=black][FONT="]Schmidt syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Scleritis [/FONT][/COLOR]
[COLOR=black][FONT="]Scleroderma [/FONT][/COLOR]
[COLOR=black][FONT="]Sjögren’s syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Sperm & testicular autoimmunity [/FONT][/COLOR]
[COLOR=black][FONT="]Stiff person syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Subacute bacterial endocarditis (SBE) [/FONT][/COLOR]
[COLOR=black][FONT="]Sympathetic ophthalmia [/FONT][/COLOR]
[COLOR=black][FONT="]Takayasu’s arteritis [/FONT][/COLOR]
[COLOR=black][FONT="]Temporal arteritis/Giant cell arteritis [/FONT][/COLOR]
[COLOR=black][FONT="]Thrombocytopenic purpura (TTP) [/FONT][/COLOR]
[COLOR=black][FONT="]Autoimmune thyroid disease [/FONT][/COLOR]
[COLOR=black][FONT="]Tolosa-Hunt syndrome [/FONT][/COLOR]
[COLOR=black][FONT="]Transverse myelitis & necrotizing myelopathy [/FONT][/COLOR]
[COLOR=black][FONT="]Ulcerative colitis [/FONT][/COLOR]
[COLOR=black][FONT="]Undifferentiated connective tissue disease (UCTD) [/FONT][/COLOR]
[COLOR=black][FONT="]Uveitis [/FONT][/COLOR]
[COLOR=black][FONT="]Vasculitis [/FONT][/COLOR]
[COLOR=black][FONT="]Vesiculobullous dermatosis [/FONT][/COLOR]
[COLOR=black][FONT="]Vitiligo [/FONT][/COLOR]
[COLOR=black][FONT="]Wegener’s granulomatosis
[B][SIZE=1]
[/SIZE][/B][/FONT][/COLOR] [B][SIZE=1][COLOR=black][FONT="]**NOTE Fibromyalgia and Chronic Fatigue are listed, not because they are autoimmune, but because many persons who suffer from them have associated autoimmune disease(s)[/FONT][/COLOR][/SIZE][/B] -
AnonymousFebruary 3, 2007 at 6:11 pm
Thank you all for replying and sharing. It really helps to know there are others . You would think that for a disease that is so real, there would be more info and awareness. It just doesnt seem to be that way.
I plan to fight every step of the way…b/c it’s the steps I dont want to lose.
I just need to shake the denial. I’m a person that lives the “never let em see you sweat” and it’s hard for me let that go.
I’ll be going for another round of IVig once the supply is available here…likely within the next two weeks. Hoping that since it’s been almost two mos, I can still just do one rather than five days in a row. It’s so boring sitting there for an entire day.And yes, my spinal tap hurt. The first dr that tried had to stop b/c I screamed and had non stop tears. They had to do it with fluroguide. They also took 20 vials of blood that day.
I dont know alot about the blood results and what they mean…
Protein level was 74 and albumins were low if i remember correctly.
And the sedemintation rate was also high…i dont have the papers in front of me right now but would like to know if anyone knows what these things really mean.thanks again…I’ll be around ! Time to do some housework and feed the family.
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AnonymousFebruary 3, 2007 at 6:16 pm
Norb,
I’d like to know what you mean by six year downward spiral ending up in a wheelchair means when you say that. I dont have pain either, not really. Sometimes the top of my worst foot will have a feeling like bones or glass shattering but i can usually walk that off.
It’s strange how you can have pain when something is numb. -
AnonymousFebruary 6, 2007 at 8:45 am
[QUOTE=ConnorZmom]Norb,
I’d like to know what you mean by six year downward spiral ending up in a wheelchair means .[/QUOTE]By that I mean that my symptoms have slowly been getting worse over the last six years. IVIG seems to slow down the progression but doesn’t appear to stop it. in 2001 it was only a mild numbness in my toes, today I have no sensation in my feet at all. The numbness is moving up my legs and there is an increasing weakness. My hands also have been getting worse. Today I couldn’t feel the coins I had in my pockets.
My fear is that a few years from now I will end up in a wheelchair. But I cannot be sure. Don’t forget that CIDP symptoms come in many different variations and mine may not be typical – if there is such a thing.
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AnonymousFebruary 7, 2007 at 6:44 pm
I was very interested to see the list you posted of autoimmune diseases – of those listed , my eldest son has CIDP, my mum has Graves disease and pernicious anaemia, and one of my 14 year old twin sons was diagnosed 4 months ago with with cystoid macular oedema and uveitis. This seems like an awful lot of autoimmune responses in 2 generations.
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