Elevated CSF – What else could it be??
AnonymousNovember 6, 2006 at 10:37 am
I have been a very frequent visitor to your site for the past few months. I can not fully describe how helpful you all have been. What a great group of supportive people!
I myself have been diagnosed with CIDP by my local neurologist for my symptoms. The muscles in my right leg are almost entirely gone. I have no reflexes, fasciculations, etc etc. However, his entire dx was basically based on my CSF protein level of 212. I have been having no luck with IVIG so I was referred to the Mayo Clinic in Oct. There I was dx’ed with possible ALS pending any response to a more aggressive IVIG regimen. My high CSF protein is the only thing keeping them from dx’ing me with ALS for the time being. My question is this, is an elevated CSF protein level the main thread that all individuals with CIDP share? Are there other conditions with the same symptoms that would be causing this? (I have been tested for all the obvious…Lyme, West Nile, MRI shows no M.S. etc) I look forward and thank you in advance for any help here.
AnonymousNovember 6, 2006 at 11:24 am
I am assuming that by your CFS level you are referring to your protein level in your spinal fluid after a spinal tap or lumbar puncture? If that is the case, then your protein level is very elevated & you probably do have CIDP. CIDP is usually dx by three things; elevated protein level in the spinal fluid, lack of relexes, & a sural nerve biopsy, which you will get of you go to the Mayo Clinic. They will also give you a myriad of tests to rule out everything under the sun (spinal nerve root biopsy, bone marrow biopsy, lip biopsy, CT Scans, MRIs, x-rays, etc…) Been there, done all that.
But just because IVIG doesn’t work doesn’t mean that you have ALS. For 40% of those with CIDP, IVIG doesn’t work at all, or not for awhile. I hate to suggest it, but I think they should try a few infusions of solumedrol (steroids), as that will probably tell you if you have CIDP. My neuro at the U of MN said that is now the first choice of treament for CIDP. In the beginning, when I was at my worst, & IVIG & PP did nothing to help me, steroids would give me a little something back. Also, there are many other treatments other than IVIG that can be tried. Please keep posting, & let us know how things go for you…
AnonymousNovember 6, 2006 at 12:07 pm
Thank you so much for your comments. I did mean CSF protein sorry about the omitted info. As far as Mayo goes, I was slightly disappointed by their dx. My Dr. diagnosed me with ALS before reading my charts or conducting any lab work. The next week after reviewing all the lab work and my lumbar puncture with the high protein, he backed off and said, “Well maybe you don’t have ALS.”!!!!! Anyway, since they were going after the ALS dx I have not had any of the biopsy procedures that you mentioned. I am going to my local neurologist on Friday. I will ask him about these. Otherwise, I do believe that I am getting a very slight boost from the IVIG. My good leg has had a constant stiffness in the calf for about the last 2-3 months. In the last 10 days that stiffness has completely gone away. Thank you so much for the great info. The one thing that I can’t get over is that the medical community is so disconnected with this condition! Thankfully this forum exists to help each other out. Thanks again.
AnonymousNovember 6, 2006 at 12:28 pm
Hi, I am a fellow Ne.resident. We lived in Battle Creek and have now retired to South Yankton Ne. If you find no satisfaction with you Dr., I go to an excellent Neurologist at Avera Sacred Heart Hospital in Yankton SD., and I highly recommend him. My legs were completely paralyzed and with IVIG treatments and Pt and OT I am starting to walk (on my walker) and making progress. If you want more info feel free to contact me. Be well, Regina
AnonymousNovember 6, 2006 at 1:12 pm
I think its really unfortunate and irresponsible that Mayo would throw such a horrible thing as ALS out to you before exhaustively ruling out every other possibility via a barrage of tests.
In many cases/variants of immune-mediated neuropathies, IVIG is not effective, or if it is, it is a very gradual improvement over time. Response to IVIG is not a way to diagnose CIDP.
I also have an asymetric form of CIDP, where weakness is much greater in one limb over the other. I have marked to severe muscle atrophy in areas. I do have sensory symptoms in addition to motor weakness. And, my CSF protein level has never recorded higher than 53. However, I do have oligoclonal bands in my CSF, and none in blood, which is a marker for MS – but, my NCV clearly shows demyelination and axonal damage, and conduction block, clearly indicative of the asymetric variant of CIDP. I’ve been seen by Neurologists at 2 top universities, and Mayo clinic in Arizona, and they’ve all come to same conclusion – asymetric multifocal CIDP.
These things are not that cut and dried…..people present symptoms differently, and respond to different treatments.
IVIG over the long haul is a stabilizing treatment for me, but provides no quick miracle turnarounds. IV Solumedrol was no good for me, and speeded up an exacerbation. I have found relief from plasma exchange as well.
I guess my message to you is to keep the doctor searching for answers – get the tests performed. If you don’t respond to IVIG, there’s steroids, immunosuppresents, chemotherapy, and even targeted proteins such as Rituxan.
I think the Mayo doctor was being lazy. Did they even perform an NCV (nerve conduction velocity?)
AnonymousNovember 6, 2006 at 1:56 pm
I did have a nerve conduction velocity test which showed that I had little or no conduction block. The Mayo Dr. told me that I would have to show a significant block to be dx with CIDP. Believe me, I am not going to go down without a fight. My first step has been to do as much research that I can and this solicatation to all of you for ideas is part of that. I am going to see my local Neurologist on Friday for more help as well. He is a very compassionate Dr. who is not satisfied with the Mayo answer either. Thank you for your post.
AnonymousNovember 6, 2006 at 5:47 pm
I don’t understand why the docs headed so quickly to ALS — did they give you an explanation? Does ALS come with elevated CFS proteins? Not responding to one of several known treatments surely can’t be the reason. Everything I’ve read indicates that your response to one treatment is not indicative of response to other treatments.
AnonymousNovember 7, 2006 at 2:27 am
Yankeebrad, in answer to your question CSF protein is raised in trauma and infection, and CIDP. ALS used to be called Motor Neurone Disease because there is motor invovement only. The diagnosis of CIDP is a clinical (bedside) diagnosis confirmed by Lumbar Puncture, it has sensory and usually later motor features.
Treatment is initialy IVIG with about 40% success rate, then plasma exchange with another 40% then prednisone and later cytotoxic immunosupressant drugs. DocDavid
AnonymousNovember 7, 2006 at 8:33 am
Thank you for taking the time to respond to my question.
The one symptom that is not real predominant is the sensory features. My symptoms in my right leg started with weakness, and very low reflexes to where now I have no reflexes, severe atrophy and just slight numbness and no feeling around the ankle area. As I stated before, my initial lumbar puncture back in June had a protein level of 212. My second lp in Sept registered 163. Not having any trauma or known infection, would I be wrong to reason that CIDP is a solid dx?
AnonymousNovember 7, 2006 at 11:02 am
You talk a lot about your one leg, is there other involvement? The reason I ask is because CIDP tends to be very symmetrical (not always), but usually what is happening on one side of the body happens on the other side as well. How are your hands? CIDP is an illness that tends to affect the peripheral nerves first, that would be the feet & hands, & then acsending from there up the legs & up the arms. It also tends to have a lot of sensory involvement, or numbness as the motor functions are affected. Also, the EMG would usually show some involvement with the nerves being blocked somewhat.
Did you go to the Mayo in Rochester, MN? That is where I had all of my testing done (3 months inpatient), but I was in terrible shape, not totally paralyzed, but could not walk, use my hands & couldn’t lift up my arms & legs. They were good about getting a dx for me, but then basically sent me home saying there was nothing they could do for me. IVIG, PP, & steroids didn’t help me much. It was at a teaching hospital that I got the protocol that actually saved my life. So don’t give up & not have a correct dx, there are some excellent neuros out there, just need a referral to get in to see one.
AnonymousNovember 7, 2006 at 11:38 am
Currently, most of my symptoms are in my right leg. My left calf has been slightly stiff and cramping occaissonly for about the last three months. Other than twitching all over, that is about it. I am in the fifth week of once a week IVIG’s. Last week I started to notice that the stiffness in my calf was not as noticeable. Hopefully that is a sign that the IVIG is, at the least, slowing this down. Back in August, about 3 weeks after my initial 5 day blast of IVIG I did have about a week’s worth of substantial improvement in my right leg. So I do have hope.
I did spend 6 days at Mayo in Rochester back in late September. I am scheduled to go back mid-Dec. Thanks to you and everyone else on this site, I will be armed with a wealth of info so I will ask the right questions.
You stated that U of Mn saved your life. If you don’t mind me asking, what are they doing for you and how are you responding?
AnonymousNovember 8, 2006 at 4:04 am
Yankeebrad, what a dilemma. There is no specific test for ALS though muscle biopsy can help. I don’t think CSF protein is affected in ALS as it is a degenerative disease, not inflammatory like CIDP. I understood you had lost all tendon reflexes which means a polyneuropathy, if it is only one leg affected you have a mononeuropathy which is a very different group of diagnoses.
From your description, I would support CIDP as the diagnosis. DocDavid
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