How are you being diagnosed with CIDP?
AnonymousFebruary 24, 2011 at 10:58 am
I keep reading about people on this forum being recently diagnosed with CIDP. How are you being diagnosed??….what test diagnosed it?..I would REALLY like to take that test!!
I’ve been dealing with undiagnosed peripheral neuropathy for almost 2 years now and getting progressively worse and doctors can’t seem to diagnose it. I supposedly had GBS back in 04..was ok by 05 and then it came back in 09 and isn’t getting any better.
Everything I’ve read seems to indicate that if you have GBS and it doesn’t go away then it’s CIDP but is there a test to prove that?
Thanks for any info!
AnonymousFebruary 24, 2011 at 11:41 am
First of all, consider this from the NIH: “…What is the prognosis?
Guillain-Barré syndrome can be a devastating disorder because of its sudden and unexpected onset. Most people reach the stage of greatest weakness within the first 2 weeks after symptoms appear, and by the third week of the illness 90 percent of all patients are at their weakest. The recovery period may be as little as a few weeks or as long as a few years. About 30 percent of those with Guillain-Barré still have a residual weakness after 3 years. About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack.
emphasis on ‘3% may suffer a relapse…many years after…’
Secondly, a less scientific, yet generally accepted cutoff goes something like this: “…The nadir of clinical symptoms had to be reached within 8 weeks….”
Meaning, that for GBS, you should reach your absolute worst within 8 weeks.
Thirdly, there are generally accepted diagnostic criteria for CIDP. They are locatable by search on the ‘net or this website. But, in my experience include a high Spinal fluid tap protein but, not always; an abnormal EMG/NCV to include both motor (muscle) and sensory (feelings) abnormalities with specific conduction blocks with conduction blocks in multiple extremities (but not always), f-wave time lags and so on.
Finally, Nerve and or muscle biopsy are sometimes used looking for problem axons, naked axons (axons with no covering left) and onion bulbs (evidence of de and re-myelination and certain other anti-body markers discovered after biopsy slide preparation and staining.
Ya’ know what? It really matters not between gbs and cidp. The treatment is the same.
By the way, there are multiple specific tests that must be run to exclude ‘other’ problems.
My final diagnosis was made by nerve biopsy (not sural).
AnonymousFebruary 24, 2011 at 12:19 pm
Dx included spinal tap which looks for high protein values; EMG and Nerve conduction Study; and clinical history– severe weakness in limbs, numbness in hands and feet which was what I had. I had no reflexes in my arms and knees. I had an MRI of the brain–to rule out MS.
AnonymousFebruary 24, 2011 at 1:01 pm
There is some differences in the treatment of GBS/Cidp. Can’t remember offhand what that is.
I do like that you mention about the 3% reoccurence of gbs. Doctors often just go right ahead and call it Cidp by empirical defination instead of symptoms and facts presented by the patient.
AnonymousFebruary 24, 2011 at 7:04 pm
Restating the answer- “When IVIG or Plasmaphresis are used, then the treatment is the same.”
Refer to: [url]http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm[/url]
“…Currently, plasma exchange (sometimes called plasmapheresis) and high-dose immunoglobulin therapy are used. Both of them are equally effective, but immunoglobulin is easier to administer. Plasma exchange is a method by which whole blood is removed from the body and processed so that the red and white blood cells are separated from the plasma, or liquid portion of the blood. The blood cells are then returned to the patient without the plasma, which the body quickly replaces. Scientists still don’t know exactly why plasma exchange works, but the technique seems to reduce the severity and duration of the Guillain-Barré episode. This may be because the plasma portion of the blood contains elements of the immune system that may be toxic to the myelin.
In high-dose immunoglobulin therapy, doctors give intravenous injections of the proteins that, in small quantities, the immune system uses naturally to attack invading organisms. Investigators have found that giving high doses of these immunoglobulins, derived from a pool of thousands of normal donors, to Guillain-Barré patients can lessen the immune attack on the nervous system. Investigators don’t know why or how this works, although several hypotheses have been proposed.
The use of steroid hormones has also been tried as a way to reduce the severity of Guillain-Barré, but controlled clinical trials have demonstrated that this treatment not only is not effective but may even have a deleterious effect on the disease…”
Thanks, Goodney, for pointing out my inaccuracy.
AnonymousFebruary 24, 2011 at 7:14 pm
from the first ‘numbnesses’ to ultimately hospital it takes?
Usually for GBS the [B]X[/B] mark seems to be 6-8 weeks max. For CIDP it’s after the 6-8 weeks or after. I’m on the cusp at 7 weeks [to the hospital that is], and tho not diagnosed w/GBS, at that time? The numbness had continued to progress from the extremeties to the torso for months after that. Until I started on IVIG.
Here is one description about GBS/CIDP which is tight and very concise, w/o too much detail so read carefully all of it?
URLhttp://www.merckmanuals.com/home/sec06/ch095/ch095h.html?qt=Chronic Inflammatory Demyelinating Polyneuropathy&alt=shURL
Another good source is this international group…. If you can find the full text? I’d appreciate a copy if it can be done…it’s very extensive!
Mostly diagnosis consists of Nerve conduction studies with either a consistent or noticable decline in nerve functions; Spinal workups to determine the degree and types of immune responses YOU demonstrate; Blood work-ups[HEAPS of them! 8-15 vials to start off?] to eliminate and or include proof of high immune responses; MRI’s CT’s and other ‘imaging’ to be sure no other issues such as spinal compressions on discs are an issue or THE issue. Then, possibly a punch biopsy to assess small nerve fibre damages… Usually, if all this points to CIDP? It just mite be?
One note? One neuro suggested the sural biopsy for me? I declined as in reading any insurance’s criteria for IVIG testing? I’d met 7 of 9 of these set criteria. To keep getting the IVIG or other therapies tho…the doc must continue to report to the insurer that the patient [US] are ‘progressing’ in some ways to justify that continued treatment. Sural Biopsies should only be done IF a number of the criteria are ‘inconclusive’. And further? They are only viable test results if handled by the best of physicians and laboratories.. if the biopsy is mangled or mishandled? Do you do another leg?
I’ve declined sural biopsies because my tests have been fairly clear in their results. I’d like to think, that I could get better and not suffer from the extra s/e’s that such a biopsy could cause.
I hope these help… Keep at it and keep testing! Don’t give up ever..please?
Getting help and treatment is soo much better than not! Hugs etc..
AnonymousFebruary 24, 2011 at 7:14 pm
From: Semin Neurol. 2010;30(4):365-372. © 2010 Thieme Medical Publishers
found at: [url]http://www.medscape.com/viewarticle/730670_7[/url]
Available clinical guidelines suggest that corticosteroids not be used in the treatment of AIDP. However, IV methylprednisolone in combination with IVIG may offer a small short-term benefit.
although my inital search led to a login required page, signing up for medscape is free.
AnonymousFebruary 24, 2011 at 7:43 pm
I was diagnosed with CIDP based on a detailed medical history, physical examination, MRIs of my spine and brain, blood and laboratory tests, EMG/NCV, and genetic testing. I never had a spinal tap, and would never have agreed to a sural nerve biopsy (I was not asked to do so).
AnonymousFebruary 25, 2011 at 10:02 am
Thank you for all the great replies!!
Unfortunately I didn’t get that “magic bullet” answer I was looking for..but..I kind of expected that. I just got my lab results yesterday from $1100.00 (out of pocket) worth of bloodwork. I’ll have to have the doctor explain it all but from what I understand it looks like everything’s normal again!!:confused:
So that means that so far I don’t have: lyme disease, diabetes, hepatitis, thyroid problems, B-12 deficiency or any of the other array of things they’ve checked me for. However, I was just recently diagnosed with Gastro paresis apparantly from the neuropathy. I’ve never lost reflexes or had foot drop, etc.. I had an NCV last year at a free MDA clinic that took all of 3 minutes on only one leg. I’m still unsure as to how thorough that was. When I had one done for GBS in 04 at a neuro’s office it took longer. They’ve suggested Fibromyalgia but I think I have too much muscle weakness and parathesias for that. Plus, I’m not tender to the touch.
I guess this could just be a relapse of GBS but it’s been almost 2 years and progressively getting worse..slow progression..but I’m worse than last year. I’m on 1200 mg Gabapentin which helps the “charley horse” muscle spasms but doesn’t do much for pain or muscle weakness. I’m also starting to get occasional problems swallowing, shortness of breath and heart palps upon exertion, (that’s really scary!)
Sorry..didn’t mean to go on so long or give my whole history..just VERY frustrated!! Especially when my neuro tells me..”well, if you had health insurance, I would have sent you to the Cleveland clinic already.” WHAT?? Once again….it feels like health care is only for the privilaged!!:mad:
Anyway….thanks to all for taking the time to respond! I get great info here! I’ve also just started B-12 and Alpha lipoic acid supplements because of what I’ve read here..hope they help! I asked the doctor first..she said go ahead and try them.
Have a sparkling day!!
AnonymousFebruary 25, 2011 at 10:27 am
When I was going to my hometown neuro trying to figure out the cause of my leg/foot weakness, he did a Nerve Conduction Test in his office. Took about 15 minutes and he used some kind of Oscilloscope. Seemed 1960ish to me and he said I tested normal.
After going to Hopkins and having a 30 minute test in a room with lots of high tech equipment (and kind of painful), they said there was no way I could have tested normal on any kind of Nerve Conduction test. After a mildly elevated protein level on my spinal tap and a clean brain MRI, I was diagnosed with CIDP and have been on IVIG (and an unsuccessful try at Cellcept) for the last 1 1/2 years. The IVIG treatments work for me. I’m not back to normal but much better.
So that free NCV you got was probably worth what they charge for it. I’m really lucky with my insurance as the Hopkins tests and treatments are certainly not cheap.
Good luck with your quest.
AnonymousFebruary 27, 2011 at 9:38 pm
‘magic bullets’ anywhere! To be straight? If there were? I’d have left here because it wasn’t needed anymore.
A GOOD nerve conduction test should be done in a warmish [NOT COLD!] place and should take at least 30-50 minutes… Both my nerve conduction and velocity tests showed continuing ‘diminished capacities’ …. from prior tests. Any test lasting 15 minutes isn’t worth the paper it’s written on, IMHO. I suspect that is why each new neuro you see wants testing done by ‘his/her people’..folks he/she trusts to do it right for them.
At times? These tests can hurt? Last testings I had, I fell asleep..mostly from the stress of getting them done [you know what I mean?] and I didn’t feel almost a thing the whole time. Limbs were that numb.. not as bad now tho.
IF you find a tech who cranks things up to the point of pain? COMPLAIN! There are some cruel testors out there! They like to watch limbs jerk around… Soo? Always get the name of the ‘testor’? And write it down to complain, if needed constructively later on. We need the good ones? But we are also at their mercy!
Lastly? Have any of you asked about Physical Therapy? IF you find a good therapist to work with..it can and does help. Neuros don’t seem to register this until you ask. Any neuro who hesitates? Me? I’d look for another one.
maintaining muscle strengths and some activity is cruicial to restoring normal nerve regeneration ..if there is any to be done! Good luck and know you are both in my thoughts!
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