How old were you when DX with CIDP???
AnonymousOctober 3, 2008 at 11:26 am
[FONT=”Century Gothic”][B][COLOR=”Indigo”]Hello amazing friends! I was just wondering how old you were when DX with CIDP. I am 23. I know that some children have CIDP (God Bless em’). But I’m especially interested in the adults ages when DX. Thanks ya’ll.[/COLOR][/B][/FONT]
AnonymousOctober 3, 2008 at 11:34 am
Yes I do. I’ve been on a roller coaster with this disease and I do worry a lot of how things will in the future. I was engaged when I was diagnosed and since have gotten married, and had a little girl. My symptoms went away during my pregnancy but came back worse than ever after she was born. I am currently trying for #2 and am expecially scared about what will happen after the baby is born. I am confident that my symptoms will go away during another pregnancy but am scared that it may get worse still post-partum.
I also wonder how long my body can continue how it is. How can it handle IVIG every month for the rest of my life ans/or immunosuppresants? At some point I feel like something will have to give. I have started to seriously consider the stem cell transplant after I have finished having children. So far, they people that have had it are doing great and are in full remission.
AnonymousOctober 3, 2008 at 11:41 am
OH wow…I need to meet you one day! We have exactly the same concerns. I wonder how long my body will hold up as well. My symptoms went away during the 2nd preg and then came back FULL FORCE a couple weeks post partum. I do IVIG q 6 weeks. Sometimes I get really upset thinking aout how I will keep up with my family (husband and 2 boys) in several years…I also feel a great deal of guilt putting my family through all of this. I always say “I’m Sorry” to everyone. They say “you don’t have to be sorry” but I know that my husband feels so overwhelmed with doing all of the things that he does for me. And sometimes I say—“you picked a lemon, didn’t you” in regards to when he married me…not knowing I was sick. He just smiles and says he loves me.
AnonymousOctober 3, 2008 at 12:55 pm
I can’t tell you how nice it is to know that someone has gone through the same with the this disease and pregnancy as me. My daughter was exactly 2 weeks old when the symptoms came back. Did you have new symptoms after or were they just worse? What exactly happened? For me, the relaspses came sooner and I progressed a lot faster. Then I started to have new symtoms appear that weren’t there before, numbness, tingling, neuropathic pain. And the fatigue is a lot more severe. Then in August, I got pregnant again but had a miscarriage (I didn’t know that I was pregnant until I had the miscarriage) And it was exactly 3 weeks after the miscarriage that I had another relapse. (the “pregnancy” enabled me to go a total of 5 weeks between infusions, medication free where I only went 2 weeks the time before that.)
I don’t really know how to think ahead without being scared. Right now, I am just praying that I get pregnant again very soon and have 9 months symptom free. I try to tell myslef that I will deal with what happens after, After. But that is hard. I am also scared that this might be my only chance to have any more children because if it gets even worse after the 2nd pregnancy I couldn’t do a 3rd.
Do you respond well to the IVIG? Have you taken any other medications? Do you fully recover between relapses? I understand about apologizing to everyone, especially my husband. He works nights right now and I work full time outside the home so he takes care of our daughter while I am at work. But it is hard to come home from work and take over being wife/mother so he ends up still being “mr mom” a lot even when I am home. I know it is hard for him and it is sad to not be able to play with my daughter when I get home because I am too tired. We are working on getting me to stay at home but that scares me sometimes too because I wonder if I will be able to care for her.
Sorry this ended up so long, but I haven’t talked to anyone yet that experienced pregnancy after CIDP like me and you.
AnonymousOctober 3, 2008 at 2:25 pm
After I delivered Chap I was fine for two weeks and then I started noticing the numbness and tingling going upward into my knees and thighs. I was SO TIRED…but I figured it was because I had a newborn and a 3 1/2 year old. During the pregnancy I felt better than ever! We went to Disney World when I was 5 months and I walked everywhere and didn’t get tired. It was wonderful. I almost want to be pregnat forever! LOL! But it just gets SO much worse afterward. Also, after he was born I started having really bad numbness in the left side of my face and trouble swallowing.
FYI…I was diagnosed with CIDP in August 08 so the whole time I was preg I didn’t receive any treatment and only saw my neuro for the first time when I was about 6 months. She sent me home and wanted me to come back after the baby was born. Thats when she started all of the diagnostic things…mri, emg…
It was finally a spinal tap combined with the emg results and loss of reflexes/numbness that gave me the dx of cidp. I have only done 1 IVIG and am doing another Oct. 13th. Also, another EMG in Novemeber. I tolerate IVIG excellently! It makes me feel like a new woman! I am not on any other medications other than B12 injections and fluid pills for swelling. Which seems to surprise people…most are on steroids as well.
My doctor seems to think that I have slowly progressive CIDP…I had symtoms of numbness and weakness for 3 YEARS 🙁 before I was finally diagnosed. And no, unfortunately I have never fully recovered. I stay at home with my children (thank God!) but am planning on finishing my nursing degree in January. I have 5 months left! I stopped to have my 7 month old. My husband and family don’t want me to go back because they think its going to be hard on me and cause me to get worse but I INSIST! I do not want to be 50 years old and still mad at myself for letting this disease keep me from doing something that is important to me. Plus, it will allow me to take better care of myself. I don’t plan on working often (or if ever) after I graduate but finishing will make me feel like I’ve beaten CIDP in some strange way (even if I haven’t!LOL).
It is certainly a daily struggle taking care of children when your body is taken over with this monster. Especially on a bad day when they want you to play SO BADLY but you just can’t gather the energy to do so. I remember just before I got IVIG I would have to cook supper sitting on a stool because my legs couldn’t stand up for long enough to do it….AND I would have to take breaks while blow-drying my hair because my arms were so weak that I couldn’t hold up the blow dryer for any length of time. WOW>…that’s the first time I’ve talked about those 2 instances. It’s heartbreaking to see that typed out. It’ s just disconcerning when we are SO YOUNG! My doctor has advised me not to have any more children. That is hard to hear as well….I really had my heart set on trying for a girl one day.
Lately I have had some problems breathing and have felt like my heard “flutters” sometimes. I’m not sure that has anything to do with CIDP. Before IVIG I would wake up at night unable to catch my breath, as if I were having an asthma attack (although I dont have asthma). I have recently been informed that that means that my diaphram (sp?) is weakened. Which is certainly scary! Who knows what we’ll be like in 20 years. All we can do is pray for the best and enjoy every single second that we have now. WOW sorry this is so long!
October 3, 2008 at 5:05 pm
Kevin was 10 and is now 11. Today is 2 years since he got this. I have read information that children are able to have a full remmission because of the changing of the body during puberty. I think there is a connection w/the thymus gland myself, as it is biggest at birth and changes through age 25 and finally by 60 or so disappears. Too long to explain now!
Dawn Kevies mom
AnonymousOctober 4, 2008 at 3:24 pm
[QUOTE=lalathompson]jdunk…so interesting that yours started after an MVA. I believe mine began after my first pregnancy. It makes you wonder if you would have still gotten CIDP if you hadn’t had the accident, or if I hadn’t gotten preg. hmm….[/QUOTE]
Yes, it does make one wonder….. This accident was 13 years ago.
I believe that I had the propensity for this to happen and the accident brought it out. Once I was in this accident, I never really got “better”. I was rear ended by a huge truck going about 40+ mph while I was at a stop. I suffered severe whiplash, a chipped femur but never lost consciousness.
The odd thing is I was a marathon runner and in INCREDIBLE physical shape prior to this accident. Drs told me I would be better in 6-8 weeks (that didn’t happen, I actually started to get worse at about 6 weeks). I spent 14 months in physical therapy and never progressed [U]anywhere[/U] near where I was pre-accident. I started to have radial nerve paralyses about 5+ years ago and was diagnosed about a year later with CIDP.
I’ve also developed other autoimmune diseases since this MVA also.
It’s been a really long journey….. as I am sure it has been for most of us!
October 5, 2008 at 9:51 am
I am 52; symptoms began March 2008. 72 seems awfully young Julie…
AnonymousOctober 6, 2008 at 3:49 am
[QUOTE=GaryO Houston]I am 52; symptoms began March 2008. 72 seems awfully young Julie…
Gary if I can live a good thirty years with this stupid disease I will count myself lucky, I’m planning on living a whole lot longer but when one day can last forever thirty years seems a very long time. :rolleyes:
AnonymousOctober 6, 2008 at 6:41 am
I was about 44 when I had my first biggee attack – it took another couple of years for a diagnosis though. I started to get symptoms when I was 40 (numb toes.)
Interestingly though, when I was about 20 (it was a couple of months after my first child was born) I had a bout of sensory symptoms – tingling all over, unwell feeling and when showering, the water temperature varied over different parts of my body (hot some parts, cold others) – I did go to the Doc, who must have thought it was something neuroligical as he asked if I had epilepsy?? Which I didn’t, and the symptoms went away fairly quickly – so I forgot about until I had my first attack (at 44) and I can remember the sensory stuff feeling similar to what I experienced years ago (only worse this time.) I don’t know if they are related?? Though, the sensory component of my CIDP is the worse affected now.
AnonymousOctober 6, 2008 at 6:59 am
Not really sure about this question for me due to the many things that were going on. I know back in I 1989 I started having problems noticing numbness and tingling and was diagnosed with neuropathy. But had CNS lupus back then too! They actually did not diagnose me with CIDP until this year of 2008.But 3 years ago I too was diagnosed with Neuropathy. Motor/Sensory. The neuropathy issue with me has been in question because of a past history and then keeping the neuropathy for so long.
I did have a 3 year remission too and then got diagnosed with CIDP. When I started getting the numbness and tingling back, I just knew it was CNS lupus all over again and my doctors were treating me for that with steroids.
Now we are trying to rule out whether the CIDP issue are thyroid, lupus and B-12 or if they are Lupus with mixture of B-12 or was it just the Thyroid causing this these past 3 years and then landed me with CIDP. So I would official diagnoses of that in 2008 but may have it it longer.
AnonymousOctober 6, 2008 at 8:11 am
It’s interesting that so many were in their early to mid 40’s.
I was 36 when diagnosed and my symptoms had been there for about 6 mos. At least.
I had injured my back and was going thru epidural injections.
I noticed mine by- for whatever reason, I pinched my toes and felt nothing. Then I noticed I couldnt bend them.
Now I cant move any of them, either foot -and feel nothing in most places from the knees down.
Two years. I’m 38 now but feel as if I’ve aged ten years. It’s been a very rough two years….
AnonymousOctober 6, 2008 at 2:13 pm
Dx August of 2005, I was 47. I was treated with IVIG every month and Cellcept 1000mg 2 times a day. I recieved the IVIG for a full 2 years. It was stopped July 2007. I work 32 hours a week, (no more than 8 hours at a time and no call) as an operating nurse 32 My neuropathy in my legs bothers me if I stand especially in one spot for 20 minutes of so. I have not gotten any worse since I was first treated. My symptoms started July 2008 and I was dx August 2008.
My neurologist says Iam in a drug remission and even suggested I try not taking the immunosuppresant. Iam afraid the symptoms might return and I would not be able to work.
I attribute my success to a rapid dx and treatment.
AnonymousOctober 6, 2008 at 7:26 pm
😮 I was 45 years young diagnosed with gbs about 11/1/07…. I was beginning to have symptoms within a couple weeks of a physical/tetanus/flu shot…… by end of October 2007 I was pretty much paralyzed neck down, with some ability to move my arms and wiggle fingers…. I continued to decline until about 10th of November… Had some significant relapses in February 2008 (weakness, numbness, tingling); Even so, I was pretty much walking unaided… and have been on ivig pretty much off and on until a consistent program of ivig around april until present…. Began pulse steroid (methylprednisilone 500 mg ) and ivig in June until present…. I’ve been diagnosed largely cidp by the university doctors in April 2008….. Although, I think it has been just the full healing process of the gbs….. My reflexes returned pretty much totally now around August 2008! I still have a numb big toe, buzzing ankles, fatigue, and a spot on my left calf about the size a grapefruit that is totally numb….. Other than that I would say I’m about 75-80%, and life is good! Heck, I have pretty much returned to an active lifestyle, except, for limited strenous work related tasks.. Dean:)
Secrets of what I consider success to recovery…. Caring, supportive, and active spouse or significant other…. Friends, prayer, therapy (I had a great deal of physical and occupational until July), good insurance, low stress,
AnonymousOctober 7, 2008 at 6:35 pm
Lauren – Here is a link about the history of GBS/CIDP
And the text reads:
Descriptions of progressive numbness and weakness over a short period followed by spontaneous recovery exist in medical papers of the early 19th century. However the peripheral nervous system was little understood so no informed explanation for the symptoms was possible. It was not until 1848 (Graves) that it was suggested that such paralysis came from within the nervous system.
Landry’s Ascending Paralysis
Certainly the best description of ‘ascending paralysis’ in this period was made by a Frenchman named Jean Baptiste Octave Landry de Thézillat in 1859.
Landry’s description was based on ten cases, five of his own and five from the medical literature. In one case, Landry gave a long description of a patient who eventually died of asphyxia. Landry’s superior, a Dr Glauber who had admitted the patient, had diagnosed hysteria but Landry predicted the patient’s demise at an early stage.
Landry offered no explanation as no abnormality was found during a post mortem. Glauber added a note however, speculating a close connection between Landry’s cases and the paralysis that follows dyptheria.
While Guillain-Barré syndrome was subsequently found to be unconnected with dyptheria, Glauber’s observation was vindicated as both types of paralysis are due to a demyelinating neuropathy.
A translation of Landry’s paper reads:
‘The sensory and motor systems may be equally affected. However the main problem is usually a motor disorder characterised by a gradual diminution of muscular strength with flaccid limbs and without contractures, convulsions or reflex movements of any kind. In almost all cases micturition and defaecation remain normal. One does not observe any symptoms referable to the central nervous system, spinal pain or tenderness, headache or delirium. The intellectual faculties are preserved until the end. The onset of the paralysis can be preceded by a general feeling of weakness, pins and needles and even slight cramps. Alternatively the illness may begin suddenly and end unexpectedly. In both cases the weakness spreads rapidly from the lower to the upper parts of the body with a universal tendency to become generalised.
‘The first symptoms always affect the extremities of the limbs and the lower limbs particularly. When the whole body becomes affected the order of progression is more or less constant: (1) toe and foot muscles, then the hamstrings and glutei, and finally the anterior and adductor muscles of the thigh; (2) finger and hand, arm and then shoulder muscles; (3) trunk muscles; (4) respiratory muscles, tongue, pharynx, oesophagus, etc. The paralysis then becomes generalised but more severe in the distal parts of the extremities. The progression can be more or less rapid. It was eight days in one and fifteen days in another case which I believe can be classified as acute. More often it is scarcely two or three days and sometimes only a few hours.
‘When the paralysis reaches its maximum intensity the danger of asphyxia is always imminent. However in eight out of ten cases death was avoided either by skillful professional intervention or a spontaneous remission of this phase of the illness. In two cases death occurred at this stage . . . When the paralysis recedes it demonstrates the reverse of the phenomenon which signaled its development. The upper parts of the body, the last to be affected, are the first to recover their mobility which then returns from above downwards.’
The term ‘Landry’s ascending paralysis’ was first used in 1876 (Westpahl). The usual treatment was with strychnine which probably did the unfortunate patients more harm than good. Landry contributed no more to neurology for he died of cholera just six years after publishing his paper.
Acute Febrile Polyneuritis
Acute febrile polyneuritis was one of six classes of polyneuropathy proposed by Ostler in 1892. Ostler considered that some of Landry’s patients had fallen into this category while others had suffered from myelitis (inflammation of the myelon [spinal cord]).
Ostler’s description was of an illness similar to what we now call GBS but with the fundamental difference of showing a fever. In 1918, Bradford et al described ‘acute infective polyneuritis’. They stated this to be the same as acute febrile polyneuritis, any fever having recovered before the onset of the neurological symptoms or being due to subsequent infection.
In the meantime, developments had been published in France…
(There are pics of these guys on the original link)
Guillain and Barré were medical students together at the Saltpêtrière in Paris at the turn of the century and specialised in neurology. During the First World War, they were both serving as doctors in the French Army. They noted the cases of two soldiers who had become partially paralysed. One, in particular, had fallen over when he had put his pack on and had been unable to get up. Both the soldiers quickly recovered, possibly assisted by treatment with pork chops and claret.
Together with Strohl, they published their classic paper in 1916. It was noted that reflexes were reduced and that the protein level in the cerebrospinal fluid was raised though this was not accompanied with a high white blood cell count. This was a crucial discovery as two common infections of the time, syphilis and tuberculosis, would have shown such an increase.
The cause of the condition was left unanswered, assumed to be some unknown kind of infection or poisoning. Guillain personally was not convinced that the condition that he and his partners had described was the same as Landry’s. Landry had noted how the condition could cause respiratory failure but Guillain saw no such evidence and believed the illness he had described was not particularly serious.
After World War One, doctors were faced with three similar conditions with slightly different definitions: Landry’s ascending paralysis, acute febrile (or perhaps infectious) neuropathy and the radiculoneuritis described by Guillain et al.
It was in 1927 when the term Guillain-Barré syndrome was first used at a presentation by Dragonescu and Claudian. Their presentation was introduced by Barré himself but Strohl’s name was omitted not only from the title of the presentation but also from the list of authors in the reference to the 1916 paper.
Later, and inevitably, it was suggested that the three conditions were one but Guillain would not countenance it. He emphasised that fever was not in his description, that the essential element of his definition was the raised cerebrospinal protein level which Ostler and others had not mentioned (because lumbar punctures had not been introduced), and that Landry’s cases were a miscellany of conditions including poliomyelitis and encephalomyelitis.
In 1949 Haymaker and Kernohan suggested a wider definition of the illness, suggesting that Landry’s ascending paralysis and Guillain-Barré syndrome were indistinguishable and called the condition Landry-Guillain-Barré syndrome. Guillain, who two years previously had retired from his position of Professor of Neurology at the Saltpêtrière, was outraged and continued to stress his own narrower definition.
Guillain’s last paper was in 1953. He believed the syndrome to be generally benign though the death of a patient, who after post-mortem was found to have extensive peripheral nerve damage, had necessitated a shift in his position. Guillain still suspected an unknown infection as the cause and dismissed suggestions, made ten years earlier (Bannwarth), that the cause was due to allergy.
In 1956, Charles Miller Fisher, a Canadian neurologist, described three patients with acute external ophthalmoplegia (eye paralysis), sluggish pupil reflexes, ataxia (lack of balance) and areflexia (absent tendon reflexes). Two patients had no weakness; the other had a facial palsy and possible weakness. All three recovered spontaneously.
Because some patients with GBS had ophthalmoplegia and there were other similarities, Dr Fisher concluded that these patients had suffered a disorder akin to GBS.
In 1958, a paper was published by Dr JH Austin who described a chronic form of GBS (recurrent polyradiculoneuropathy). Austin’s paper was based on a review of 30 cases, the earliest of which went back to 1894, and on two of his own. This chronic form has gone through a variety of names (chronic inflammatory polyradiculoneuropathy – CIP – Dyck et al 1975) and attempts to define it though it now generally known as CIDP (Dyck et al 1982).
Guillain died in 1961 and Barré in 1967. Having first published the relationship between ascending paralysis and an increased protein count in cerebrospinal fluid in 1916, they had seen a huge increase in knowledge as well as witnessed the use of early intensive care techniques.
In the 1980s, western doctors were astonished to learn of a yearly GBS-type epidemic amongst children in a province of China. Investigations in China and in other rural communities around the world confirmed the existence of a variant or possibly variants of GBS that attacked the nerve axons rather than the myelin sheaths. It was also discovered that the bacterium Campylobacter jejuni was of major importance. Since then, an enormous amount of research has been conducted into isolating the particular antibodies responsible for the different ‘syndromes’).
So until the day when everything is known and redefined, Guillain and Barré will continue to receive the recognition. But spare a thought for poor neglected Strohl who history has ignored and consider too the work of Landry, the victim of an early death from an illness he contracted from his own patients.
Hope that helps,
AnonymousOctober 7, 2008 at 7:35 pm
Very interesting article Kelly! I had to read this! So many nerve diseases now and all the unexplained neuropathies that still have no names. There is still much to be done when it comes to the nervous system. Maybe someday we will see much easier cures and not costing as much! Thanks for sharing!
AnonymousOctober 8, 2008 at 10:55 am
Oh my goodness Kelly,
Thank you so much for finding all of that helpful information. You are so kind! Yes, it does help. It is a little scary knowing that our disease is fairly young…in the grand scheme of things! And that even today, it hasn’t been completely “figured out”. Thanks again…YOU ROCK!
AnonymousOctober 20, 2008 at 7:24 am
[QUOTE=Emily’s_mom]As I’ve said before “Google is my best friend”.
I tell you though, I really would like to go to that province in China where the children get GBS symptoms every year. I think it would be fascinating to study what goes on there.
What province is that? I’ve heard of Chinese Paralysis Syndrome, but never heard of it recurring every single year. Do you have a link? I swear, I will go there and report back to you. Would be fascinating.
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