April 8, 2016 at 1:49 pm
Hi guys I had diagnosis of cidp from a neurologist who is well-known from John Hawkins Ms area of expertise that looked at my symptoms history and had a pretty clear EMG test that showed signs of cidp, who recommended I get started an IVIG pretty soon that was like over a month ago. Currently right now I have a different neurologist that I’m seeing because the other one is just too packed with patient at the moment. So my primary neurologist just did a lumbar puncture and a bunch of blood work looking for viruses, lyme, white blood cell count and ext.
My question is this doctor doesn’t seem to have a lot of experience with autoimmune nervous system disorders and I feel if some of the tests still come out in the normal range or false at the time I had got them taken he’s going to be less likely to treat me for these type of diseases or something that’s incorrect?
April 9, 2016 at 10:31 pm
Does the second neurologist agree with the diagnosis of CIDP? Was the spinal fluid test supportive of the diagnosis?
April 10, 2016 at 2:07 pm
You said, “Hi guys I had diagnosis of cidp from a neurologist…” What were the diagnostic criteria for the diagnosis?
and then, you said- “..who recommended I get started an IVIG pretty soon that was like over a month ago…”
If he suggested you start pretty soon, in what way did he offer to help you start? You had already seen him, therefore, you were already a patient.
At any rate, CSF protein levels alone neither rule in nor rule out a CIDP condition or one of it’s variants.
Specifically, an article in PubMed on Lewis Sumner Syndrome states- ” The CSF protein level was normal in 67% of patients and mildly elevated in the remainder.”
And this- ” Eighty-two percent of MADSAM neuropathy patients had elevated protein concentrations in the cerebrospinal fluid” Well, it means 18% of patients did not have elevated levels of protein.
In summary, you’re already unhappy with and second guessing your second neurologist. Don’t be a mind reader, wait for his diagnosis and treatment plan.
Or, go find somebody you will be happy with.
For what my history is worth, every single Doctor I saw repeated every single test. It’s part and parcel of the medical side of things. Further, it is required to rule in and to rule out all kinds of disseases for this condition.
April 11, 2016 at 1:28 am
Well my CSF proteins were actually elevated, so my neurologist is looking into IVIG at the moment. Would a nerve biopsy be the last test to run to check for someone that has cidp or any of the variants?
April 11, 2016 at 7:23 pm
We all wish diagnosis could be simple and sure. The fact is that everyone seems to have a slightly different set of symptoms making it more difficult to diagnose. Please read the following booklet, start on page 14 “diagnosis”:
April 12, 2016 at 2:22 am
A nerve biopsy can be done when the diagnosis is inconclusive. If the spinal fluid test supports CIDP or GBS, and nerve conduction test supports the diagnosis, and the symptoms are typical of GBS or CIDP, a neurologist should not require a biopsy to begin treatment. Sometimes an insurance company will want a biopsy even if the neurologist does not, because they are hoping it will be negative so they will not have to pay for the treatments (which are expensive). I was fortunate in getting by without one. An invasive test should not be done unless necessary.
April 12, 2016 at 9:45 am
Regarding the reference booklet that Jim-la gave please continue to page 43 for the diagnostic criteria for CIDP.
And, I cast my vote with what GH said about sural nerve biopsies. They should only be done as a last and desperate attempt to make a diagnosis.
For example, from the Journal of Neurology and Neurosurgery & Psychiatry. 1998 Jan; 64(1): 84–89.
“RESULTS—The results of the first logistic analysis showed that CSF protein concentration >1 g/l (odds ratio (OR)=38.5) and neurophysiological studies consistent with demyelination (OR=51.7) were strong predictors of CIDP. When forcing the significant features and the sural nerve biopsy data into the model, an independent predictive value of sural nerve biopsy could not be found. The neurologist was able to discriminate patients with and without CIDP (area under the curve (AUC)=0.95). His diagnostic performance did not improve significantly by offering him the results of sural nerve biopsy.
CONCLUSION—Any additional diagnostic value of sural nerve biopsy in the diagnosis of CIDP could not be shown.”
April 15, 2016 at 9:54 pm
So my neurologist is going to start IVIG treatments, I believe he’s going to do 5 days worth of treatments for one week the dosage should be based on my weight from what he said. Does this it sound pretty standard to you guys for first time?
April 17, 2016 at 12:27 am
Yes. The five-day regimen is called the “loading dose.” The dosage is based on ideal weight for your height. In practice they may use actual weight, but this might be too high for people who are extremely overweight.
After the loading dose, one might go on a “maintenance dose.” This will vary, as it is adjusted based on the response of the patient.
I had no difficulty with IvIg. Others here have reported needing lower infusion rates or using some drug in conjunction with IvIg.
I am unusual in that I had two loading doses and nomaintenance doses. IvIg didn’t seem to do much for me, so my primary treatment was changed to plasma exchange (PE). Five years out, I now take no treatment at all.
Best wishes with your IvIg treatments!
April 24, 2016 at 3:25 am
I had many tests and nothing showed up although it was thought possible CIDP. I had a Sural nerve biopsy and now am left with permanent numbness on the top of my left foot also my left foot is much weaker. I would not recommend to have one if you can avoid it. The test did not give conclusive results for me. I had it more for my peace of mind but if I had my time over would choose not to go that way. CIDP is very difficult to diagnose. Ali
May 20, 2016 at 9:55 pm
I’m no longer going to be seeing my current neurologist due to some issues with a few different things that have caused some disagreements on both sides, I did get approved for IVIG but do to leaving my neurologist I will have to get it under a different Nero. My diag came from a very positive EMG showing signs of CIDP & elevated proteins from the CSF. Would you think another neurologist would feel confident to just start the treatment in your opinion?
I know this is a wired question just wondering if any of you have been in a similar situation.
May 21, 2016 at 12:53 am
I think it would be highly unlikely that a new Doc would accept results and treatment recommendations from another Doc. They usually re-run all the tests and then recommend their own treatment programs. The State of Florida has the worst reputation for this and has frustrated many forum members. i hope you find an exception to this trend.
September 19, 2016 at 7:15 pm
Could anyone give me an idea of what lab antibody panels my Dr could run through Athena for cidp, and if there is any other alternative companies also? thanks
September 20, 2016 at 2:31 pm
Am I missing something here? At what point is GBS considered CIDP? I’ve read the booklet Jim generously provided and see no difference in tests for GBS. It’s a bit confusing to me as I’m still stuck in a nursing home unable to walk. My toes are starting to wiggle just a tiny bit, but this is after 7 months from the first onset of symptoms. Thanks for any input in advance! I hope everyone has a great day and continues healing.
September 20, 2016 at 10:38 pm
GBS usually peaks in 4-6 weeks and then begins to improve. GBS is almost always a one-time event and will rarely reoccur. However, GBS can return as RGBS or in the chronic form of CIDP. There are other peripheral neuropathies/variants too that are similar. Here is a summary about the various autoimmune disorders:
The length of time it takes to heal from GBS varies greatly by individual and the severity of demyelination. Residual symptoms may last for years after most of the healing is done.
If your autoimmune system is still producing antibodies that attack “self”, you may want to ask your doctor about trying Plasma Exchange (PE) treatments. This is the primary way of removing those antibodies from your system. IVIg, SCIg, and often Prednisone, will stop your autoimmune system from producing more of those antibodies, but won’t remove what’s there, that’s the job of PE.
September 21, 2016 at 7:49 pm
I received PE early on and it did nothing for me. I had a mini relapse several months after starting to recover due to an infection I contracted whilst at the nursing home and received a round of IVIG with an aggressive antibiotic regimen through IV. I showed signs of improvement quickly thereafter so I don’t know which worked. In any case, I’m due for another round of IVIG treatment next week, but also talked to my doctor about considering PE again. I did get another infection recently, but didn’t relapse this time so maybe the IVIG did help after all. Thanks for your input, Jim.
You must be logged in to reply to this topic.