Bloodwork/Spinal tap Question
AnonymousApril 24, 2007 at 3:57 pm
I have been having a really difficult time with getting a firm diagnosis and it seems my neuro is is getting frustrated. I have a 60/40 copay on my insurance and its a bare minumum plan because I work at a family own flooring store. My neuro told me he asn he still belives I have CIDP or a GBS variant. It’s hard to tell exactly what I have but my bloodwork and SPinal tap came back normal. Can I still have CIDP idf I do not have abnormalities in my labwork? I feel like I’m going backwards and I can’t afford the IVIg treatments that my neuro wants to try again. I had IVIg 5 years ago with no benefit from many infusions (12-15 over a years time in 2001-2002) I am consistantly getting worse and I have noidea what to do now. I was sure that my labs would show what we expected but that did not happen the way we planned.
My neuro doesn’t want to treat my symptoms alone, he wants my to be on IVIg and I can tell that I am one of the patients that he can’t fix which gets tricky. He believes me about my pain and is treating me but it keeps getting worse. I’ve been taking prednisone in a tapering diosage for about 3 weeks and I have not had any improvement. I am getting weaker and my pain is increasing, most likey from my work activities. Snce I’m filing for SSDI that will not be problem much longer. My issue now is what else should they look at is they have just done all of the follow tests in the past 3 months:
Multiple Blood test (heavy metals etc)
Tried Lyrica but didbn’t help the pain
AnonymousApril 24, 2007 at 4:20 pm
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,
AnonymousApril 24, 2007 at 10:38 pm
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
AnonymousApril 25, 2007 at 10:55 am
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.
AnonymousApril 25, 2007 at 6:13 pm
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.
AnonymousApril 25, 2007 at 6:32 pm
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.
April 25, 2007 at 8:22 pm
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
I am sorry to hear about your frustration and pain. I am another patient who is helped tremendously by Neurontin – generic gabapentin.
AnonymousApril 25, 2007 at 8:25 pm
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.
AnonymousApril 26, 2007 at 4:35 am
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
AnonymousApril 26, 2007 at 10:48 am
TO clarify what I have been going thru I think I’ll give a timeline.
1995 – I had a pallet of ceiling tile fall on me while working at Home Depot
It has been deemed unrelated and coincidental.
1996 – January I noticed the beginning of drop-foot in left leg, following atrophy to left calf. I filed for workers comp and was deinied and fired when I sued HD
1997-2000 I worked a few jobs to make ends meet while I met wioth various doctors who were very confused and thought it was from the accident.
2000 – Bith legs had atrophy and drop-foot, then left hand followed. Pain started to increase and became daily and unbearable. I was seen by docvtors in Florida – USF Hospital and diagnosed with ALS and told to moive home to NJ with my family.
2000-2002 – Saw Doctors in HUP, Johns Hopkins, Thomas Jefferson. THey agreed I had been misdiagnosed and I had an Ideopathic Neuropathy and started IVIg that (over 12 months overall, Inpatient, Outpatient, Home Treatment) Rituxin infusion that was unsuccessful, Steroids, Neurontin.
2003 – I had enough and gave up and tried to go back to work in a job that I could sit down. Pain was still bad and I was still getting weaker. I still viosited my neurologist in Johns Hopkins but only for check-ups.
2004-present – I have been getting even weaker and my endurance is very low. I cannot sit too long due to nerve pain, stand or walking is bothersome too. I have had all my tests (EMG, Blood, Spinal etc rerun) My right hand is now show a conductio block and is getting weaker. I have spasms in my legs all day and night and the paion is so bad I am filing for SSDI so that I can try to get a better qualitry of life before I go out of my mind. THe doctors are still confused and I am very nervous about my future as a father and husband.
To add to my stress and distress I have recently lost my only two siblings in two seperate tragedies and my parents have divorced after 32 years of marriage. My mother does not recognize that I have a disease and is in denial. She does not offer and help whether emotional or otherwise. My support system has been destroyed and I cannot afford the $40K my IVIg will cost out of pocket for 9 monmths of treament-and it failed to help five years ago.
I’m afraid of getting worse and when or if it will stop. I have never regained strength nor have I had any remission. I have slowly but steadily gotten worse over the past 11 years.
What do I do now???
AnonymousApril 26, 2007 at 10:49 am
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.
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