Bloodwork/Spinal tap Question

MAC34,
I sympathize with your frustration. I know how hard it is waiting for a diagnosis while your condition worsens. From my understanding, diagnosing CIDP is tricky. It’s really a clinical diagnosis (made on the basis of symptoms) with testing that confirms the diagnosis or, alternately, shows something else. I did not have a spinal tap, but I’ve heard they can be “normal.” All my blood work was normal, including myositis testing done at a research lab in Oklahoma. My EMG showed strong but slow impulses. I also had muscle and sural nerve biopsies; the muscle was normal and the nerve showed abnormalities, but was not diagnostic. MRI (done early to rule out MS) was normal. So basically it was the symptoms, the EMG and some demyelination on nerve biopsy that pointed to CIDP. The muscle biopsy ruled out primary muscle disease (like polymyositis or inclusion body myositis).

If IVIG doesn’t help, alternative treatments for CIDP include high-dose steroids (intravenous), plasmapheresis, immunosuppressants, and some other drugs. I’ve heard that Prednisone may help in combination with other treatments but usually isn’t that effective on its own and also has bad side effects from long-term use (can cause bone thinning over time, so calcium is recommended — I use TUMS — kills indigestion and also provides calcium).

A lot of neurologists never see cases of GBS/CIDP — it’s pretty rare. If yours is having trouble with diagnosis, is there a teaching hospital nearby? (Duke? I forget where Greensboro is.) You might have better luck at an academic center.

I’ll keep wishing you the best,
Caryn

A spinal tap usually will have normal results. When I had one done, it was more to rule out MS. Everything was normal, except for slightly elevated protein levels which is consistent with CIDP.

mac,

ivig works on 79% of us. try the plasmapheresis [pp], also expensive. i do not like to bring this up, but if you mean you have been getting progressively worse since 2001, ask your doc about als. prolly it is not als cuz 6 yrs is a long time to have it. did you try neurontin for the pain? up to 5600 mg/day. take care. be well.

gene gbs 8-99
in numbers there is strength

I believe that I read somewhere on the net that the average time from onset to diagnosis of CIDP is 6 years. Again, a lot of neurologists just don’t recognize it. ALS symptoms are different in that they are not symmetrical (the “L” in ALS stands for “lateral”). I also remember reading that the criterion to determine GBS vs CIDP is time of progression of symptoms — more than 8 weeks of progression is CIDP. GBS symptoms tend to come on fast and hard, but don’t keep progressing.

Mac, have you actually seen the results of the EMG? Does it show demyelination. Has the neuro done a SPEP (Serum Protein Electrophoresis) test or one for antiMAG antibodies? Both are very expensive and may have to be send to another lab. AntiMAG, a variant of CIDP, progresses very slowly and many patients do not respond well to standard CIDP treatment like IVIG or PP.

My antiMAG IgM, also called Paraprotein Demyelinating Neuropathy, started in 2001 and now I have no sensation in my feet and the numbness has affected legs and hands also. Usually I use a walker (rollator) and tire very easily.

Hi Mac34,

I decided to chime in – I was new here a few years ago, and remember someone that sounded similar to you. Take a look at this suggestion to see what it’s worth.

Back on the old forum, ericVance was a member that frequently posted. He was mid-30’s at time of onset, had slowly progressive worsening symptoms, that developed resistance to ivig. He also had poor results from steriods.

Doesn’t this sound a lot like your situation? Can’t remember if he had anti-mag/mgus or mmn, but last time he posted, it seemed he was benefiting from rituxan.

With the limited resources your insurance provides, you might first research what tests are required to rule/in rule/out (anti-mag, mmn), and then find services from medical facilities in your area that have relevant experience in those types of diagnosis. That way, you won’t end up spinning your wheels (and benefits) and still not come up with a game plan.

Mabe some of the others that were around a few years back can remember a little more of ericvance and his circumstances. (or how he’s doing now)

Hope this provides a few clues.

cd

Here is a web site about how doctors sort through possible peripheral neuropathies. Look through the list and see if there are more tests you want to ask your doctor about.

An Algorithm for the Evaluation of Peripheral Neuropathy
Ann Noelle Poncelet, M. D.
February 15, 1998 – American Family Physician
[url]http://www.aafp.org/afp/980215ap/poncelet.html[/url]

I am sorry to hear about your frustration and pain. I am another patient who is helped tremendously by Neurontin – generic gabapentin.
Flossie

Can anyone explain the SPEP test ? Is that a blood test ? And testing for the antimag…is that standard when the dr does the massive blood tests in the beginning ? My records are at work locked in my drawer. They tested many many things in my blood when I was first diagnosed. I remember asking Norb a few weeks ago about the specific testing and I looked at my records.
I think I had the SPEP…if that’s blood work…and it was normal. I will look again in the morning. I just wonder if the antimag antibodies are specifically stated as such on those reports. My protein was 75 -if I remember right-and I dont think that is too terribly elevated. What else causes elevated protein ?

I dont seem to be responding either. Not to IVig. And, I believe it could take 6 years from onset to diagnosis as Caryn posted. It seems like it’s been that long ago that I noticed I wasnt able to keep up with others when walking. I am short tho…and always blamed that.

I’m going to post a new thread b/c I have other questions and dont want to take away from Mac…but, am very curious about the AntiMag thing.
What should I look for in the blood tests ? There are a whole bunch of them.
One of them said I have hypoalbumin anemia. Whatever that’s suppose to mean.

thanks all…good luck to you Mac34…this disease, it’s variants, and all things like it- leave us with so many questions. I hope you get answers soon.

I shall do my best to answer some queries. The onset of C.I.D.P. is not an average of six years it develops more rapidly, as already said it is a Demyelinating Neuropathy progressing for more than eight weeks and most people respond to some form of immunosupressant treatment a few do not.

ALS stands for an anterior, lateral sclerosis which describes what happens in the spinal cord where the anterior and lateral columns are damaged. These columns connect with muscle branches of the peripheral nerves so that muscle weakness is the predominant feature rather than any Sensory disturbance.

Protein electrophoresis is done from a blood test where a sample is spread in a line across a piece of paper soaked in ninhydrin, an electric current is passed through the paper and different proteins ascend the paper at different rates so that they can be identified and are calibrated. There is no such thing as Hypoalbumin anaemia are you sure it is not hypoalbumenaemia which means a low level of the protein albumen in the blood. DocDavid

Thanks Doc David.

It is the hypoalbuminanemia….the second one you said. I’ll look through my test results to see if I can find anything on the prtoein electrophorersis.
As always, thank you for your expertise !

Stacey

Just to clarify, I did not mean that the onset of CIDP takes 6 years — it is much faster than that, although mine was relapsing/remitting, so the progression was somewhat slow. What I meant was that many docs don’t recognize or test for CIDP so that it can take a long time for a correct diagnosis.