Is early diagnosis really that important?

Generally speaking, early diagnosis for any disease is preferable. However, sometimes the disease must assert itself to recognizable. Once I was diagnosed, I realized that I had very mild, infrequent episodes, with nearly full, but still incomplete, recovery for perhaps 15 years. In the few months before my diagnosis, my symptoms became noticeably worse. If I had gone to a physician in the three or four years before my diagnosis, let alone the previous decade, we [I]might[/I] have discovered the disease, but most probably not. Why? Because the nerve conduction tests are not necessarily that sensitive if the symptoms are very mild and the clinical presentation could have been ascribed to other conditions. I likely would have received several diagnoses over the years, none of which would have been right. However, once I started to decline noticeably, prompt diagnosis and initiation of treatment was essential to keep me from declining further.

My experience suggests three things. One, the occasional odd symptom is not sufficient cause to seek a diagnosis. Two, noticeable decline over the course of three or four months is sufficient cause to seek a diagnosis. Three, a noticeable decline gives the clinician something to work with and should allow a prompt diagnosis if the disease is “classic” CIDP. If the CIDP is not classic, it will take longer, not because doctors are ignorant, but because the diagnostic process is more complicated.

I hope this post helps.
~MarkEns

An early diagnosis means early (and hopefully successful) intervention so as to avoid the possibility of permanent nerve damage. That said, as many have noted, it is often difficult to obtain an early diagnosis because of the rarity of CIDP, wide spectrum of symptoms, time taken to rule other diseases, etc.

Sharon

I missed out on an early diagnosis because my presentation was so minimal in the beginning. It was confused as something else. One Dr. told me I drank too much alcohol, and that, combined with job stress was causing my neuropathy. He said I needed to stop spending money on Dr.s and should be spending time at home with the family destressing. OOPS, he got that one wrong !!

Four years later, another neuro redid the EMG and said that it was progressing. He did some more tests and eliminated “the bad fatal ones” and said that at this point it would be hit and miss trying to figure out which one it was.

Five years after that I went to a University Hospital, and it took them over a year and two different diagnosis to get it right. Then I got some active treatment. But by that time, my symptoms had progressed quite a bit. I did get some treatment and it made a difference.

Sometimes I wonder how different my outcome would have been if that first Dr. would have looked deeper and found CIDP in 1989 when it was so small. By the time I was diagnosed in 1999, ten years had passed and the opportunity for early intervention was missed.

By the way, now I am on disability, I have lost my job and career. I struggle financially and cannot give my children the life I wanted to.

regrets. I guess so.

But I can only play the cards I have. If the cards are not in my hand, I cannot play them. I am in charge of my attitude, and the direction of my thoughts. No one can take those from me.

God bless you, Dick. This is the reason why it is so important for all of us to get the word out and educate as many as possible.

I think early diagnosis is critical. Unfortunately my husband saw a regular neurologist for 2-3 years who had little expertise in CIDP. By the time he was referred to a neuromuscular disorder clinic neurologist, he had an atrophied rt. hand and forearm and foot drop. Had he had gotten correct diagnosis he wouldn’t be in the shape he is in now. You can’t undo all the damage, but at least no more major damage is happening since he saw the correct specialist.
Laurel

I think early diagnosis is important too. I was diagnosed two months after my first onset of symptoms. I had the flu shot in Novemeber 2010 and numb foot to days after the shot. After seeing my G.P. in November and not happy with her diagnosis I took it upon myself to seek out a neurologist. By January 2011 I was diagnosed with CIDP. I have very mild symptoms. My first IVIG infusion a month ago gave me good results. After the initial headache I started to feel almost normal again. I could have forgotten I had CIDP for a few weeks. All (or most) symptoms had disappeared. But it is the one month mark today since IVIG and mild symptoms are resurfacing. So I scheduled my next maintenance dose of IVIG next week. I hope to get the same results as the first time and then just keep getting IVIG monthly to keep this disease in check. But you really never know just how your CIDP is going to progress. Who knows, I could start to decline quickly in the future or maybe the IVIG will stop working for me. But for now I am very glad I was diagnosed so quickly. It gives me hope that I will be able to keep living my life as normal as possible and not let CIDP interfere too much.

I was diagnosed in late February 2011 and by the time insurance allowed treatment in early March, I was feeling some additional loss of control/sensation almost daily. Early on the morning of the fourth day of the five consecutive days of IVIG treatment, I felt no further loss of sensation.

I am a self-employed forester and struggle to make any income let alone a living, but many others are worse off than I.
I praise God I have wonderful wife and who makes a good income. We struggle financially, but things could be much much worse.
I still do field work 2x’s a week, but must price my work by the job and not by the hour, i work safely but cannot always put in a full day and steep terrain can really slow my productiveness.
Slowly I am getting better, but must be proactive in my treatment, learning to ask lots of questions and not assume every detail is covered adequately. Medical professionals and insurance people are still just people and get distracted and have high patient/work loads, so they do mess-up, but usually by accident.
Be polite but engaging and treat them as professional and friends so that they will willingly be on you team and work to expedite your care. And don’t be afraid to fight for good care and to fire those who are not performing as they should.

Best of luck to yoou with your ‘journey’. Be positive, and persistent. Keep working to get better! God bless you 😀

I was diagnosed in late February 2011 and by the time insurance allowed treatment in early March, I was feeling some additional loss of control/sensation almost daily. Early on the morning of the fourth day of the five consecutive days of IVIG treatment, I felt no further loss of sensation.

I am a self-employed forester and struggle to make any income let alone a living, but many others are worse off than I.
I praise God I have wonderful wife and who makes a good income. We struggle financially, but things could be much much worse.
I still do field work 2x’s a week, but must price my work by the job and not by the hour, i work safely but cannot always put in a full day and steep terrain can really slow my productiveness.
Slowly I am getting better, but must be proactive in my treatment, learning to ask lots of questions and not assume every detail is covered adequately. Medical professionals and insurance people are still just people and get distracted and have high patient/work loads, so they do mess-up, but usually by accident.
Be polite but engaging and treat them as professional and friends so that they will willingly be on you team and work to expedite your care. And don’t be afraid to fight for good care and to fire those who are not performing as they should.

Best of luck to yoou with your ‘journey’. Be positive, and persistent. Keep working to get better! God bless you 😀

Quote #1- “…In the initial Mayo report, it was recommend that the time of progression of the illness that was required to diagnose CIDP should be 6 months…”

source- [url]https://www.gbs-cidp.org/newsletters/2000summer.htm[/url]

Quote #2- “…Therefore, in our original proposed CIDP criteria, the mandatory inclusion criteria consisted of the presence of proximal and distal weakness with progression longer than 2 months…”

source- ditto

Quote #3- “… early diagnosis and treatment is important in preventing irreversible axonal loss and improving functional recovery…”

source- Current Neurology and Neuroscience Reports
Volume 7, Number 1, 63-70, DOI: 10.1007/s11910-007-0023-5

Quote #4- “…[I]What is the prognosis? The course of CIDP varies widely among individuals. Some may have a bout of CIDP followed by spontaneous recovery, while others may have many bouts with partial recovery in between relapses. The disease is a treatable cause of acquired neuropathy and initiation of early treatment to prevent loss of nerve axons is recommended.[/I]”

source- NIH

The bottom line, expert or not, early diagnosis is not nearly as important as is early intervention to prevent permanent axon loss.

yeah, ya’all can quote me- a joke ok?????

I was diagnosed 8 weeks after the start of the CIDP when I could not get up anymore. Early discovery to me is very necessary. The longer one goes undiagnosed the more chance of residual long term side effects. I was a lucky one. They thought it was GBS and sent me to O.S.U. where they
specialize in both GBS and CIDP.

I still believe that for most, this illness is going to take them where it wants to go. I had a very quick dx of GBS, (changed to CIDP 8 wk. later,) & was given 5 PE while still walking & functional. I then continued to deteriorate almost daily, & within a few weeks after that was started on IVIG. Still I continued to deteriorate rapidly. I ended up with one of the worst cases of CIDP that Mayo had ever seen, no matter what treatment I received, I didn’t get better.

For those who have the slower progression of CIDP, meaning a decline in months or even yr. I do not believe that a fast dx will make that much difference. I believe that this illness will progress based on where it is going to go. That the whole progression has been predetermined. It is different with the relapsing/remitting people who can be virtually paralyzed for months, get IVIG, & get up & walk. Some suffer axonal damage, some do not, why is that? JMO…

[QUOTE=jeanbell1]… According to a Neurologist at the Cleavland Clinic in Ohio, only 5% of the patients who come there for treatment of CIDP- actually have CIDP. [/QUOTE]

According to a Neurologist, or two, or three at Cleveland Clinic Ohio I did not have any emg/ncv evidence of sensory nerve conduction block.

Furthermore, they stated that it was unlikely treatment with IVIG would be successful. By the way, it was a team of neurologists at another Cleveland Clinic location that sent me to Ohio for a 2nd opinion.

On the other hand, following comprehensive testing including a specialized muscle biopsy at Mayo Clinic, Minn it was found in the biopsy that I do have onion bulbs, demylinated, remylinated and naked axons. The ‘new’ diagnosis? CIDP more likely than MMN (multifocal motor neuropathy).

As for the IVIG? Those results are incontrovertible- it does help me!

Misdiagnosis? I’ve talked somewhat futilely about that on this forum before.