How long did it take for you to get a diagnosis for CIDP?
AnonymousApril 18, 2011 at 8:59 pm
I was told it is acceptable for a Neurologist to take 1 year to diagnose CIDP. This is totally unexceptable to me when the symptoms are at their peak. Also, I do not agree that a good Neurologist would fail to perform an EMG or lumbar puncture if patient was going numb and had severe balance problems. I am questioning the qualifications of many neurologists. I am questioning the qualifications, also, from a reported “expert” on this CIDP Foundation site. Traveling around the world speaking about CIDP does not make someone an expert.
AnonymousApril 19, 2011 at 12:05 am
It took the dr’s 2 days to dx Emily with GBS. When she relapsed 2.5 months after her initial diagnosis she was then diagnosed with CIDP.
The problem is that CIDP has many of the same symptoms of MANY other illnesses. CIDP isn’t that common & dr’s usually go for the easier dx’s first. Then they widdle down until CIDP is left.
I don’t know that it should take a year to dx. I would hope it would be only a matter of a few months at the most.
I think the standard of care for people presenting with numbness & loss of balance should be an MRI of the brain & spine followed by a spinal tap & an EMG.
But seeing as how those symptoms are those of someone having an anxiety attack I can see where dr’s would be hesitant to perform those tests immediately. I feel the way I do because my life has revolved around CIDP for 5 years now.
What dr on associated with The Foundation are you questioning?
AnonymousApril 19, 2011 at 5:42 pm
My symptoms of CIDP were mild and intermittent for quite awhile, before becoming more significant — but still intermittent. Once my symptoms became serious and worsening, it took probably about four months to be properly diagnosed. I have heard of it taking a number of years, because CIDP is slightly different in its presentation in each individual case, and let’s face it, many physicians — including specialists — aren’t that familiar with it.
AnonymousApril 20, 2011 at 12:06 pm
I think the amount of time it takes to get an accurate CIDP dx also depends on how “standard” (for CIDP) your symptoms and test results are, as well as how well you respond to the standard treatments (IVig, prednisone, et al). Some people present all the classic symptoms which are then backed up by an NCV and/or EMG, lumbar puncture, et al. And then there are those whose presentation and test results are unclear, perhaps muddied by additional medical problems. Also, CIDP symptoms vary widely. Some people have pain, others do not; some people’s symptoms are bilateral; others are not. You get the picture.
In my case a dx was made very quickly after an NCV and I was put on IVig immediately. But it didn’t work at all and I began to experience more symptoms on my left side than on my right. So my neuro began to question his original dx, expecting that IVig would work if, indeed, I had CIDP. Then he packed me off to a specialist in neuro-muscular disorders. This neuro wasn’t sure what I had until he performed an NCV and said, at the first shock, “Oh yeah, this is definitely CIDP.”
I was lucky to have had two competent neuros, along with classic signs of CIDP with administration of the NCV. The first dx was made at around 3 months following my initial visit with the first neuro, then confirmed around 6 months later by my second neuro. Subsequent tests at Northwestern Memorial Hospital confirm NCV and EMG consistent with CIDP.
AnonymousApril 23, 2011 at 12:35 am
If one’s symptoms are very slow in progression (possibly even a matter of years,) I can see where a dx would be difficult. But many are originally dx with GBS & when the improvement hasn’t begun after 8 weeks or so, then the dx is changed to CIDP. That was the case with me. Originally dx with GBS on April 2, 2002, & basically bedridden by the end of April, I was rediagnosed with CIDP by the middle of May that year. But I was inpatient at Mayo & had had every test known to man performed to rule out any other possible illness. Wish I had had a milder case than I did, but I got hit very quickly & very hard…
AnonymousApril 23, 2011 at 1:32 am
I walked into the a Neuro’s office with severe tinling from my bilateral toes and up towards my knees. It was getting progressively worse. I also had bilateral tingling from my finger tips and up my arms. I had a severely unsteady gait. I couldn’t stand up with my eyes closed as I would tip over. I was dropping things and could no longer care for myself. I gave her a piece of paper with 8 separate diagnosis’ on it and asked if she wanted to make a copy. I told her I would really like to be checked for these. One of the dx I listed was CIDP. I asked straight out for a lumbar puncture and an EMG. She refused both. Had she done even an EMG at that point I would be walking today. She always had a way of convincing me that my symptoms would go away on there own. I believed her. There is just sooo much more to the story. It would knock your sock off to hear it all.
AnonymousApril 23, 2011 at 9:57 am
JeanBell, my first neuro thought that my symptoms would probably go away by themselves also…which is why I waited a month before starting IVig. I don’t know what ever gave him that idea…isn’t the “chronic” in chronic inflammatory demyelinating polyneuropathy fairly self explanatory? I stated in an earlier post that he (first neuro) was competent…but I guess I have to clarify that his competency lay more in knowing when to refer on than in knowing much about CIDP…which is of course why he referred me on!
I am sorry that your doc wouldn’t consider intervention early on before permanent damage occurred. Honestly, while I am not in favor of suing, I wonder if you have a case.
April 23, 2011 at 10:57 am
It took 2 months to get a correct diagnosis. The diagnosis from my EMG was CIDP; my 1st neurologist [B][U]decided [/U][/B]that it was vitamin B-12 deficiency. My symptoms became progressively worse over the 2 months I was being treated for B-12 deficiency.
From our shared experiences the process to a correct diagnosis sometimes is long and you’re correct the protracted diagnosis should be “unacceptable”.
I had a hard time first figuring out that I had a neurological issue instead of a circulatory problem. Thank God (literally) I “happened” to cross paths with a long time friend who told me the problem sounded like it was neurological and I should go quickly to Baylor College of Medicine in Houston.
Two months seemed like a long and unacceptable time to me, but I now realize, relatively speaking, my diagnosis was quick.
I feel education (medical and the general population) would make a difference. I’ve found several medical personnel don’t know much about CIDP and some had never heard of it.
I traveled to North Carolina last year to participate in the Miracle Mile. One of my objectives was education, so I talked to my local newspaper and the Charlotte news reporter who emceed the event last year. The local newspaper published an article about me, CIDP and the miracle mile. Several people contacted me about the article and CIDP. Maybe it wasn’t a great contribution, but if it makes a difference to only one, it was well worth the effort. The Miracle Mile itself an amazing educational tool.
Sorry for the soapbox … but imagine what our combined efforts could do towards getting the word out.
AnonymousApril 23, 2011 at 2:52 pm
It took sever years, but my symptoms were very mild in the beginning. At the time that things began to get “interesting” I cross pass with the right doctor at the right time and said the right things. From that point it took another two to three months to get the diagnosis confirmed.
As a side note, a few of the physical therapists I’ve encountered in the last five weeks have some familiarity with GBS. However none of them ever heard of CIDP. Is kind of hard to explain why you can’t raise up on your toes as part of the rehab program. “You need to do that to build up the muscle and reduce the swelling”… No one seems to understand that if you haven’t been able to do that for the last ten or so years that you can’t do it now even if you try extremely hard. :rolleyes: That’s what makes life so interesting…
AnonymousJune 3, 2011 at 10:41 am
First diagnosis while being on holidys was bladder-infection. Upon arrival in Athens went to a general hospital, they performed various tests during a week (also neurological) and couln’t come to a conclusion. The neurologist there said there was nothing neurological. Left hospital, went to an independent neurologist who decided on either some brain-infection or Guillain Barre. I went to another hospital, neurological department, demanded to see the head and with the suggestions of the independent neurologist asked for a lumbar punction, EMR, relevant blood tests, and a electromuograph. The latter showed definately something amiss while the EMR was clean. I was hospitalised, started on Prezolon and lumbar puncture as well as other blood tests were performed. The day after they started me on the 5-day IvG with diagnosis ICDP. Very quick if I take the other stories in consideration.
AnonymousJune 4, 2011 at 10:44 am
I’m new to this site and have just read a view posts. It took a year to get a diagnosis and I had to have a breakdown in my doctor’s office to get that. The EMG showed no problems so he did the dreaded nerve biopsy on Feb. 10, of this year. This is my problem with the biopsy, his exacts words when I went in for results were “you have minor demylating of the nerve sheath which could also be age related (I’m 51) but I believe you have CIPD.” After what I went through I wanted a definite answer not maybe! My symptoms came on over about 8 years all in my feet. Starting with annoying tingling and finally horrible pain which 500mg of Lyrica only takes the edge off so I can function. The pain never ends. Some days I can walk OK, most days I can’t. I hold down a job and a marriage to a wonderful supportive man with a smile on my face. I’ve had one round of IVIG which caused a terribe rash and anemia. It seemed to work for about 2 weeks but that was it, that was April 15, I am supposed to go again June 15. Do I have CIPD? Should I do the IV again? I have numbness in my toes, my feet ache, my walking and standing is limited and my legs ache much of the time. Without the Lyrica the numbness, tingling, and pain is horrible. This has taken me from a vibrant, healthy, very active woman, to a sedentary, sad person struggling to survive and get the proper help.
You must be logged in to reply to this topic.