How old were you when DX with CIDP???

I was 19, now I’m 25.

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.

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.

I was around 50 or so when symptoms started showing up. I was diagnosed until I was 62. Since then It’s been a very slow down hill slide. Of course that could be because I’m just getting older. 😀

I was 35 when diagnosed

I wonder what is the longest time someone on this forum has had CIDP? (Since being diagnosed) And how the disease has progressed?

Does anyone think that being older or younger has a significant affect on the symptoms or how the disease reacts?

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

Hi there, I am a 38-year old female and I came down with CIDP when I wad 37 (just about a year ago). I was diagnosed within 9 weeks on onset of symptoms, got on treatment right away, and feel that both my age and early treatment helped me to recover from this.

Hi-I was dx in 2000 and after 9 years still making changes. What works for awhile stops working after time and you change to what works. Good luck.
I was 52 when I was diagnosed.

I was 40 when officially diagnosed, but had symtpoms which started 8 years prior (@ age 32) after a motor vehicle accident.

Emily was 4 years 3 months old when she was dx’d with GBS. About 3 months later she was dx’d with CIDP.

Symptoms started when she was 3 years 8 months old & slowly progressed.

I was 42 when diagnosed.

I was diagnosed in July of this year, symptoms started in late April. I’m 33.

I was 44 when the symptoms started, and will ‘celebrate’ my 10th anniversary early next year. I wasn’t diagnosed until 2001.

Keep fighting,

Deb
London

I was 40 when symptoms started and 42 when diagnosed – I plan to make it to 72 at least. 😉

[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!

I was diagnosed with CIDP in September of 2003.I’ve had IVIG since then and just had imuran added.Mine is progressive.I get my IVIG every other week now.

[QUOTE=Lesa]I was diagnosed with CIDP in September of 2003.I’ve had IVIG since then and just had imuran added.Mine is progressive.I get my IVIG every other week now.[/QUOTE]

How old were you, –unless you are preferring not to give your age?

I was 27 when I started have vague symptoms & was diagnosed CIDP at age 31.

I am 52; symptoms began March 2008. 72 seems awfully young Julie…

Gary

Sorry about that!I was 42.

I was 45 when dx’ed, but insurance refused treatment until I was 47, I’m 49 now and getting stronger all the time on ivig. Symptoms started abt 10 yrs ago.

Wow,….looks like a lot of us were around 40- mid 40s when diagnosed!

[QUOTE=GaryO Houston]I am 52; symptoms began March 2008. 72 seems awfully young Julie…

Gary[/QUOTE]

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:

Hi,
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.
Kazza

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.

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….

well wishes,
Stacey

Hi,
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.

Pam K

😮 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,

I was 68 when it started in 2001 and 72 when I was finally diagnosed correctly.

I was dx with GBS in Sept 07 at the age of 27 then dx with CIDP in April 08 and now im 28

Another person in the 40’s!

I was 41 when I first heard the neurologist say CIDP.
That was two years ago.

Rhonda

Lauren – Here is a link about the history of GBS/CIDP

[url]http://www.gbs.org.uk/history.html[/url]

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)

Georges Guillain

Jean-Alexandre Barré

André Strohl

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.
Guillain-Barré Syndrome

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.
Later Developments

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,
Kelly

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!

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.

Kelly

Syptoms at 30; diagnosed at 30. I am 32 now.

[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.

Kelly[/QUOTE]

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.

-kat