Has anyone had normal protein levels in spinal fluid?

Not everyone DOES have an elevated protein. The fact that there was a response to the solumedrol is indicative of some sort of inflamation, cidp, ms, transverse myelitis etc. So perhaps if the doc words it right the insurance won’t be an issue. All of the diseases and more than I listed also get treated with ivig. I will pray that all works out so you can start treatment soon.
Dawn Kevie’s mom

My protein also was not elevated on my lp to confirm the cidp but everything else I had done did give me probable cidp and then I got a 2nd opinion with another round of bloodwork and x-rays to confirm the cidp. I have found in 8 years that somethings are better, like my walking and balance, and then they get worse again, and almost can say I am “no better, no worse”-I have a combination of relapse-remit/progressice cidp, so I understand your frustrations of feeling better and then it is all snatched away!!
Hang in there. We are here for you and for each other.
Emma

Hi,

I had my total Protein tested and it was 21 mg/dl. Have the asymetrical sensory and motor decrement. I was probable diagnosed with Multifocal form of CIDP. With this form, a percentage of patients do not have elevated protein. The nerve damage tends to be focal or at specific locations and spots, but the limb beneath those parts are affected. Sometimes cranial involvement but there should be some evidence with the EMG and NCS to support or suggest active denervation and or demyelination to some degree.
Were you on the steroid during the time period that the LP was performed?

Any time the presention goes asymmetrical, a whole host of other possibilities exists. It would be important to determine and rule things out as necessary to get to the bottom of it so the best treatment for you can be developed.
If your symtoms are severe and a definite diagnosis has not been made, they may treat you agressively.

Sounds like your doctor is on top of it. Best Wishes

Hi there – first off, I’m totally sympathetic to what you are going through. It took me about 2 years to get a proper diagnosis and treatment and it’s frustrating not to know what’s going on for certain.

Two things – first off, have you had your folic acid level tested? The reason I am asking is that I have something called an MTHFR enzyme mutation and I have to take a B Vitamin complex to compensate – it’s called Foltx and it’s a combination of B-12, B-6 and folic acid. One of the most important things the hemotologist stressed to me is that B-12 and folic acid have to be in balance, too much B-12 can cause nervous system problems as well as too little. In addition, steroids can upset the balance of the B’s in your system so can temporarily make that situation worse. For me taking steroids is like cramming two weeks worth of energy into two days and then not having that energy for the next two weeks. I still take prednisone during treatments because it’s better than meningitis but it doesn’t come without a price.

Second, I also had a normal protein level in my spinal fluid, I also have asymmetrical symtoms, my right leg is worse than left leg, left arm worse than right arm etc.; I also have cranial nerve involvement etc. etc. And my B’s are OK because we test them frequently. 😉 I had no trouble getting approved for treatment as there are versions of CIDP that have normal protein levels, as Tim said.

Good luck and keep us informed – I always feel guilty welcoming another member to our elite pack but this forum is an excellent resource for treatment information, for support, and for just plain old fun. 😀

Julie

Read this,
Show it to your doctor.

I took a few of those 5 and 7 pill steroid packs before I knew what we were dealing with. within 7-10 days after stopping both times, I suffered the most severe symtoms that I had ever experienced. The left side of my face went numb like someone turned on a switch, also my left arm and both legs. They bascally irritate things or tick off the situation. What I have found is if you do any steroids and they help, you must very gradually stop taking them or roll right into an alternative teatment. Otherwise you system may rise up and hurt you.

Summary Lewis-Sumner syndrome (LSS) is a dysimmune peripheral nerve disorder, characterized by a predominantly distal, asymmetric weakness mostly affecting the upper limbs with sensory impairment, and by the presence of multifocal persistent conduction blocks. The nosological position of this neuropathy in relation to multifocal motor neuropathy (MMN) and chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is still debated. We report the clinical, biological and electrophysiological features, the course and the response to treatment in 23 LSS patients. The initial symptoms started in the distal part of an upper limbin 70% of patients. They were sensorimotor in 65%and purely sensory in 35% of patients. A cranial nerve involvement was observed in 26% of patients and a distal limb amyotrophy in 52%. The CSF protein level was normal in 67% of patients and mildly elevated in the remainder. None had serumanti-GM1 antibodies. There were multiple motor conduction blocks (average of 2.87/patient), predominantly located in the forearm, whereas demyelinating features outside the blocked nerves were rare. Abnormal distal sensory potentials were found in 87% of patients. The electrophysiological pattern suggests a very focal motor fibre demyelination sparing the nerve endings, whereas sensory fibre involvement was widespread. The course was chronic progressive in 71% of patients and relapsing-remitting in the others. During the follow-up study (median duration of 4 years), half of the patients progressed with amultifocal pattern and the distribution of the motor deficit remained similar to the initial presentation. The other patients showed a progression to the other limbs, suggesting a more diffuse process. Fifty-four percent of the patients treated with intravenous immunoglobulin showed an improvement, compared with 33% of the patients treated with oral steroids. Overall, 73% of patients had a positive response toimmune-mediated therapy. LSS may be distinguished from MMN by the presence of sensory involvement, the absence of serum anti-GM1 antibodies and, in some cases, a positive response to steroids. In some of the patients in our study, LSS evolved into a more diffuse neuropathy sharing similarities with CIDP. Others had a clinical course characterized by a striking multifocal neuropathy, which suggests underlying mechanisms different from CIDP. Overall, whatever the clinical course, LSS responded to immunemediated treatment in a manner similar to CIDP.

Keywords: Lewis-Sumner syndrome; multifocal acquired demyelinating sensory and motor neuropathy; multifocal motor

It’s normal to have regular protein levels with CIDP, especially after having received an immuno-modulator.

My daughter has had 3 spinal taps. 1st one her protein was 93, 2nd one it was 96, & the 3rd one was 48.

The dr should have ordered the spinal tap BEFORE giving you treatment. It should have been one of the 1st tests performed. But since he/she didn’t do that, he/she will have to use other diagnostic tests to confirm your diagnosis.

If your EMG & MRI’s come back normal but you are still having symptoms the dr can still order a round of IVIG. This does happen many times. It’s called “empirical treatment” The use of the IVIG can be a diagnostic tool. If you improve after a good loading dose then the dr can say that you do indeed have an auto-immune disease. Some people never get the exact name of what they have, because they never meet diagnostic criteria for one specific disease, but the do get treatment & they can get better.

Good luck,
Kelly

I have had 2 normal protein lps and 1 abnormally high lp result. 5% of all gbs/cidp have normal lp results. Asymetrical appearance is a common symptom in cidp patients, symetrical is only in gbs patients. Symetrical is also in cidp patients. From the symptoms you have described, in my opinion you should have no problems with the insurance coverage, because it looks like typical cidp symptoms. Keep a positive attitude and things will work out in your favor. Take care.

Hello:

I’ve had two LP’s over the years, one was 48 and the other 52. Basically high normal. I did however have oligoclonal bands in my CSF, which are a marker for MS, I definitely do not have MS, but O-Bands are an indicator of an immuno irregularty crossing into the central nervous system. Yet, I am assuredly diagnosed with asymetric CIDP, Lewis-Sumner Syndrome. This was confirmed by two universities and Mayo. I have very abnormal NCS, primarily motor symptoms, and am quite disabled for the past five years. I am 45 years old and was approved for full disability by social security upon first application now over two years ago. I find moderate success with IVIG, but steroids were ineffective. So, yes, you can have CIDP with normal protein count, but it does not hurt to get to a teaching university and undergo a battery of tests to rule other causes out. These tests can include nerve biopsy and bone marrow biopsy, among others.

Best of luck to you.

i have a handbook “for the lay person” from the gbs/cidp foundation. it’s been in my bathroom for months now, i keep forgetting to bring in new reading material……. sooooo i’ve read through the book more than a few times and it state that approx. 20% of all patients diagnosed with CIDP do not have elevated CSF.
peace,
flower

Hmm! I wonder if that could be wrong with me. They said nothing to me about taking Folic Acid with my B-12. Thanks for sharing this. Right now I too have no diagnoses what is causing my CIDP. But it’s really tearing my body up. I can relate! Not a fun picnic having this stuff. Hope they do get you started soon on getting help