Neuro says probably not CIDP – Need advice
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July 31, 2009 at 11:21 pm
I just finished reading fsoprano’s threads. I hope he/she reads this one.
I haven’t posted for a while because I didn’t have anything new to report. Now that I do, I’m seeking advice.
As many of you know, I was diagnosed with CIDP about three years ago, when my foot drop first began to appear. I had neuropathy in my lower legs and feet for a couple of years prior to that.
My CIDP diagnosis was made by a neurologist on the basis of slightly elevated protein levels in my CSF, bilateral neuropathy, and foot drop. NCV and EMG studies followed. I’ve been treated with prednisone, ever-increasing doses of IVIg, and plasma exchange. None of these courses of treatment produced any noticeable improvement in my symptoms.
After my last neurologist gave up on me, I began seeing a new Neurologist, who specializes in CIDP. During my first visit with him, a month ago, he ordered an EMG, which he performed himself, just this morning. This morning’s EMG was much more detailed and much more exhausting than any of my prior studies, and it was evident to me that this neuro really knows his stuff.
The EMG indicated that I have severe axonal damage in both legs, but no demyelination. This would, by definition, rule out CIDP. Supporting that diagnosis (or non-diagnosis) is my lack of response to all the standard treatments for CIDP. That having been said, he feels that there is a small chance that there may be inflammation, and he recommended a nerve biopsy as the only diagnostic option left to us. He was very up front about the procedure and he mentioned that approximately 20% of these procedures result in ongoing pain for the patient. But, he stressed that it’s the biopsy or nothing (in a non-threatening manner).
I’m not prepared to give up on this, so the nerve biopsy seems to be my only choice at this point. I’m willing to risk the possible resulting pain if there’s a good chance to identify my problem, which I believe there is.
Have any of you undergone nerve biopsies? Was the procedure beneficial in identifying your ailment? Would you do it again?
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August 1, 2009 at 12:39 am
Rod,
For me, the Sural nerve Biopsy was the final diagnostic tool. They took a chunk of nerve and a little muscle from just below my calf. It was done outpatient with a spinal block I believe. From the biopsy they were able to conclusively decide that there was demyelination AND remyelination as well as axonal damage and a muscular component as well.
My protein level was slightly elevated. I think my count was 56, the normal ranged up to 45, so it was what 15% over “normal”? The EMG and Nerve Conduction tests were abnormal, but not abysmal. I had some symptoms, but not “red Flags”, just pink ones. The biopsy confirmed the diagnosis, and eliminated the others.
residually I have no pain from the procedure. It was well done, and I healed promptly. I do know that others have not had as positive an experience and might not recommend it. In my case it was the right thing.
Is your loss sensory, muscular, or both?
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August 1, 2009 at 9:54 am
Hi, Dick. Thank you for your prompt reply. I have both sensory and muscular losses in both lower legs and feet. Dr. England did mention that one possible result of the nerve biopsy would be a loss of sensation in that area, which is not a significant concern to me because I don’t have any sensation in that area now. 🙂
The Sural Nerve Biopsy you described is the same procedure he’s recommending for me. I didn’t see any other viable option, so I made an initial appointment with a neurosurgeon while I was at the clinic.
Dr. England did mention his willingness to use immunosuppressant drugs, if necessary, but he said he wanted to confirm the initial CIDP diagnosis before he’ll resort to that because of the myriad of side-effects associated with those drugs.
What is your current course of treatment and your current condition, if you don’t mind sharing that information?
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August 1, 2009 at 10:44 am
Do me a favor and google nerve and muscle biopsy and read articles about these. I know that as of a couple of years they really do not recommend them. As muscle biopsy is more risky than a nerve biopsy. Can the do some other testing and go around this for a while before they do this if they think you do not have cidp? What else is he thinking it could be? Maybe do testing for that. Just be informed and then you will never regret your decision. God bless
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August 1, 2009 at 12:07 pm
A nerve biopsy would show any onion bulbing on your nerves. But I believe an MRI with contrast would also show inflammation, if you had it along your spine (which is very common with CIDP I’m told) or in your brain.
If the MRI isn’t an option then, if you really have no other choice, I think doing the nerve biopsy might help you get to a final diagnosis.
It’s a tough call to make. I wish you luck on making the right informed decision.
Kelly
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August 1, 2009 at 12:32 pm
Hi Rod. I had a skin biopsy performed a few months back-dx was small fiber neuropathy. My next biopsy, sural nerve, will be the next step to a hopeful dx. I, like you, have both sensory and motor issues, but I respond ok to steroids. I have no issues with doing the biopsy, anything to help get a true dx, no matter what-is how I feel. Remember, as with everything else with this syndrome, everyone is different. Keep us updated. Take care.
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August 1, 2009 at 3:37 pm
Hi Rod,
My CIDP dx was confirmed by a sural nerve biopsy. I have neuropathy in my legs, hands and face. Slowly progressing muscle atrophy in my feet, legs and hands. After months of tests an elevated protein level in the CSF and axonal damage shown by EMG and NCV were the only abnormal results.
I have been treated with IVIg, prednisone and currently CellCept without improvement.
The sural nerve biopsy gave me the mental relief of a dx and I would do it again. The nerve was taken from behind and below the outer ankle bone. The procedure was painless. I had a few twinges in the morning putting weight on the foot while the stitches were still in, but now it’s just a dead spot.Scott
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August 1, 2009 at 11:58 pm
Thanks to everyone for the encouragement and the advice. I’m going ahead with the nerve biopsy because I believe that I need to either confirm or eliminate the possibility of CIDP.
I’m also scheduled to head back to Florida in a week for three more cervical spine procedures. My cervical MRIs are so bad, even I can see that the neural canal is almost closed. I’m still of the opinion that some or all of my symptoms (neuropathy, foot drop, muscle weakness) may possibly be due to Cervical Spondylotic Myelopathy (CSM), and the orthopedic surgeon who performed my earlier procedures agrees with me.
Since I was unable to schedule my first appointment with the neurosurgeon until after I return from Florida, I should know by that time whether my suspicions about CSM are correct.
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August 2, 2009 at 12:21 am
Rod, good luck with all of this.
Sometimes …well always, I wonder if I really have CIDP, too…I’m just looking for a way out tho, really. I dont respond to anything…havent had plasma exchange yet. I’m just one with the kind that is very slow progressive. I get IVIG but it doesnt make me “better”. I just dont get noticably worse.
Please keep up posted…all of your symptoms sound identical to mine. I had back issues, too. They got better after a series of three epidural injections…however, within 6 months, I was diagnosed with CIDP b/c my toes were numb. That was three years ago in Sept. Now I have drop foot both sides, cant feel any of my toes, sporatic feeling to the knees now reaching above the knees…sporatic feeling in the hands to elbows. I have bouts of pain but none that linger.The original back pain is gone.
Best wishes to you .
Stacey
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August 3, 2009 at 10:16 pm
Hi Stacey. I’ll post a progress report when I return from Florida, around the end of August. The numbness in my legs extends to the middle of my calves. I do have numbness in my fingers on both hands, but it doesn’t extend beyond than my fingers. My primary complaints are weakness in my legs and loss of balance. I don’t even attempt to walk without my AFOs.
I had severe radicular pains in both legs, due to spinal stenosis and foramenosis in my lumbar area. The lumbar surgery cleared that up and I haven’t had any pain since the surgery.
I do have lancinating (stabbing) pains in my toes on both feet. These pains are very intense, but they are of short duration. My new neuro also offered to prescribe nerve pain medication, but I declined. I consider myself fortunate that the pains don’t last long, and they’re easily handled (for now).
I know I’m hoping for a miracle, but hey……why not? I also purchase lottery tickets. 🙂
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August 5, 2009 at 2:07 am
Rod,
I’ll make my story as short as possible. I have had CIDP since 1989. It has slowly progressed over time. I functioned without limit until 2001. I was approved for SS disability in 2005. I can walk unassisted from room to room in the house, provided I sit when I get there. I use a cane or a powerchair in public, depending.
At my last neuro visit he felt I had not progressed much in the past 2 years. He also does not expect I will recover any of what I have lost. I am fatigue-ing faster and recovering slower. My pain is greater.
As for treatments, I have done prednisone, Aziathropine, IVIG, a host of nerve pain stuff, lyrica, Neurontin, topomax, plus some anxiety stuff. Pain meds have ranged from oxycodone to methadone to morphine, percoset and ibuprophen. I still think I am missing some, but it is late.
Remember, everyone goes through this a little differently. Neuro’s have differing theories regarding treatment, and most importantly, nobody wants the treatment to be worse than the disease. Many of the drugs on my list are nasty ones to be taking, and other’s have equally challenging lists.
Take care
Dick S -
August 5, 2009 at 1:29 pm
Dick,
Thanks for the chronology of your experience with CIDP. I fear I may be following your path. If that’s the way that it has to be and if I can’t do anything about it, then so be it. But, I believe that I’m still on the first part of the path and, hopefully, there are still some options available to me.
Dr. England told me that he’s willing to try Cellcept, Imuran, etc., either alone or in combination with other treatment methods. However, because these are powerful drugs and because he isn’t absolutely certain at this point that I have CIDP, he’s insisting on the nerve biopsy before prescribing them. I can’t find any fault with that logic.
Of course, if the biopsy shows that I don’t have CIDP, then what’s causing these symptoms? Nerves just don’t die for no reason. That’s why I’m still exploring the possibility of Myelopathy/Myelitis.
Meanwhile, I’m grateful that I’m relatively pain free. I’m also grateful that my right arm still functions properly when I command it to raise a glass of tequila to my lips. I may have to grasp the glass a bit tighter than most folks, but hey…..nobody is perfect. 🙂
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August 9, 2009 at 3:34 pm
Hi Rod,
To make this not too long, I am in the same boat as Dick…slow progressing.
Read my post under, “To Rhonda and Ryan, and others interested in how bad CIDP can get”.I remember back in the beginning, when they, (the neuros), were going through the months of coming to a final diagnosis, telling me they had to see what I DIDN’T have compared to what I did, at first. They told me that the list of Neurological Diseases/Syndromes/Problems was VERY long, and many having similar symptoms, that they had to keep crossing off what I DIDN’T have, as MS was what they first thought I had, but just didn’t EXACTLY fit.
So, they wanted to do the nerve biopsy, (Sural nerve). I had no problem with that. They had a neurosurgeon do–had no problems with that, as I couldn’t feel in that area anyways, (behind the ankle).
But the problem came down to the LAB that did the biopsy. The lab technician messed up on it, and couldn’t be sure what that person was seeing. My neuro got very angry, and wanted to come to the lab and see it for himself. “Oops-I already threw it away”, was the response, only to make my neuro further angry. Turning the procedure done, useless.My neuro explained what had happened to me, so I offered to him to go ahead and do another one. He told me he would just continue with the other diagnostical tools, (yikes-the pills I’m on now, make my memory bad, so I can’t remember all those test’s names with just letters, but it was where they put the electrodes around your body and check nerve responses, and the one where they put needles into the muscles, etc.). They finally did come to the end diagnosis, with the help of my neuro.’s teacher in Med. School, who is a top neuro of San Diego County, and one who deals with rare diseases. He was the kind of specialty-neuro, where he would decide if or if not he would see you, (he did chose to see me, and did more testing).
So, if you do have the Sural Nerve Biopsy, know ahead of time that first you have a good neurosurgeon to do it. AND EVEN MORE IMPORTANT, that the send it to a lab who knows what they are doing–as my lab flubbed it. I see in posts back to you, that many had suggested that the lab used, be the Mayo, as they are more used to Neurological problems, and what the results should look like.
Keep us up on your final results. Good luck.
KEDASO
(Ken) -
August 9, 2009 at 10:29 pm
[quote=KEDASO]Hi Rod,
To make this not too long, I am in the same boat as Dick…slow progressing.
Read my post under, “To Rhonda and Ryan, and others interested in how bad CIDP can get”.I remember back in the beginning, when they, (the neuros), were going through the months of coming to a final diagnosis, telling me they had to see what I DIDN’T have compared to what I did, at first. They told me that the list of Neurological Diseases/Syndromes/Problems was VERY long, and many having similar symptoms, that they had to keep crossing off what I DIDN’T have, as MS was what they first thought I had, but just didn’t EXACTLY fit.
So, they wanted to do the nerve biopsy, (Sural nerve). I had no problem with that. They had a neurosurgeon do–had no problems with that, as I couldn’t feel in that area anyways, (behind the ankle).
But the problem came down to the LAB that did the biopsy. The lab technician messed up on it, and couldn’t be sure what that person was seeing. My neuro got very angry, and wanted to come to the lab and see it for himself. “Oops-I already threw it away”, was the response, only to make my neuro further angry. Turning the procedure done, useless.My neuro explained what had happened to me, so I offered to him to go ahead and do another one. He told me he would just continue with the other diagnostical tools, (yikes-the pills I’m on now, make my memory bad, so I can’t remember all those test’s names with just letters, but it was where they put the electrodes around your body and check nerve responses, and the one where they put needles into the muscles, etc.). They finally did come to the end diagnosis, with the help of my neuro.’s teacher in Med. School, who is a top neuro of San Diego County, and one who deals with rare diseases. He was the kind of specialty-neuro, where he would decide if or if not he would see you, (he did chose to see me, and did more testing).
So, if you do have the Sural Nerve Biopsy, know ahead of time that first you have a good neurosurgeon to do it. AND EVEN MORE IMPORTANT, that the send it to a lab who knows what they are doing–as my lab flubbed it. I see in posts back to you, that many had suggested that the lab used, be the Mayo, as they are more used to Neurological problems, and what the results should look like.
Keep us up on your final results. Good luck.
KEDASO
(Ken)[/quote]Ken
Thanks for the information and for the caveat about the lab. I’m hoping I won’t have the same problem because the neurologist, the neurosurgeon, and the lab are all part of the LSU Health Sciences Center and they’re all in the same location. I’ll have my first meeting next month with the neurosurgeon who will do the biopsy, and I will mention my concern to him.
On a less positive note, my neurologist, who impressed me greatly when he was doing the EMG, told me, “….you’re a very interesting case.” That’s not a good thing to be hearing from a neurologist, especially one who is regarded as an expert in the diagnosis and treatment of CIDP. 🙁
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August 10, 2009 at 11:20 am
Rod
I spent 3 weeks at Mayo Rochester in 1996 and had all of the tests including the sural nerve biopsy. Dr. Peter Dych diagnosed me with CIDP. I have since had IVIG, Plasma exchange and Prednisone with no improvement.
I went to a new neuro here in Knoxville TN who after more tests advises me that I have “genetic neuropathy” and there are no known rx to improve my condition.
I for the past 2 years have been on a cane, have foot drop and only about 25% of my balance. I am an 80 year old white male, and have consoled myself to live out my life with this wonderful condition.
Jack Houston
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