Diagnosed and Undiagnosed!
March 12, 2017 at 12:00 pm
After experiencing and dxd with foot drop and brachial neuritis with no underlying cause, my “primary” neurologist ran nerve conduction and diagnosed me with CIDP. My insurance co denied the preauthorization for IVIG because my weakness came on suddenly which was not consistent with their guidelines. Since then I’ve had a relapsing pattern of mostly sensory, and very bizarre, tactical symptoms. I was referred to university neurologist (very famous) and he disagreed with my neurologist findings, said my limbs must have been cold, and then added he thought I had a movement disorder (of which I had also be dxd years before, but this strictly is part of the end-portion of the relapsing pattern). After that I gave up. Year before last, I had nerve conduction studies, after a relapse, on my arm which showed a pattern of in-nervation. The neurologist had me tested for ANOTHER genetic test and I never bothered going back. I was primarily there to see a Rheumotologist to figure out if my problem was autoimmune which was negative. I’m now experiencing another relapse with massive cramping that seems to rotate through my body and have had “fixed” cramps in my left hand and toes where they freeze like your toes when you have a “charlie horse”. I’m in a lot of pain but it was much worse when it first started (almost 3 weeks ago now). I believe it is similar to what they call nerve hyper excitability. I feel at a loss of where to turn. My gut tells me to go back to the UCI neurologist who disagreed with CIDP as he is an expert in this. Being such, does anybody have any idea why my nerve conduction studies at least TWICE showed the demyelating pattern of CIPD but later didn’t? I had a sural nerve biopsy which showed evidence in one area but not in another (?muscle versus nerve?). I’d really appreciate hearing from those here who seem to experience almost exact type of symptoms I have had yet were readily diagnosed while I’m being bantered about. Perhaps this is my fault for not sticking with one neurologist.
March 12, 2017 at 11:44 pm
Neuropathies are sometimes difficult to diagnose, so it is not unusual for there to be some confusion at times. You won’t get a better diagnosis here, but if you can’t a solid diagnosis from those neurologists you have seen so far, you should try to get to a Center of Excellence in neuropathy for diagnosis.
March 13, 2017 at 2:05 pm
It is probably just as important to rule out certain diseases as it is to rule in what you do have.
Please review the “Related disorders” paragraph of this report (Another good article by Dr. Lewis.) from the National Organization for Rare Disorders. These and other genetic disorders need to be ruled out if your doctor deems it necessary.
Some forms of CIDP may be termed Relasping-Remitting. That is, they follow a pattern of getting better and then getting worse. You can find this quote from the Genetic and Rare Diseases Information Center: “For most people with CIDP the condition is slowly progressive, but about one-third of people experience a relapsing-remitting course (relapses of symptoms with partial or complete recovery in between).”
March 14, 2017 at 1:39 am
Sandra, are you referring to Dr. Mozaffar at UCI? He was following my case and advised my new neurologist (I had moved to a subacute facility which is why I wasn’t seeing him anymore) against starting me on Prednisone because he didn’t believe I had CIDP. My new neurologist decided to start me on Prednisone anyway and it’s the reason why I’m walking today. I remained so stagnant before and receiving monthly IVIG infusions simply wasn’t enough to get me walking. Sometimes even experts don’t know the best course of action since it affects everyone so differently. Getting different opinions isn’t a bad thing. I really hope you’re able to get an answer and receive a course of treatment that works for you. I noticed that since tapering from Prednisone, I’ve started feeling a bit weaker when it’s closer to my IVIG infusion due date.
March 14, 2017 at 11:27 am
I was shocked to read your post as your suspicion is spot-on. I’m guessing you must have been at UCI to begin with in order to have been treated by Mozaffar. Thank goodness your new neurologist trusted himself! I’m curious what he thought you had to begin with? He was the one who dxd me with brachial neuritis so perhaps when the denervation continued he was reluctant to admit it may have even caused by a larger disorder. I have been tested for EVERYTHING! Especially genetic studies and entrapment neuropathy. Not one lab test has been even slightly abnormal and that include neurology and rheumatology. The only thing abnormal is continued nerve/muscle studies.
I decided to call the neuromuscular center yesterday and am waiting for the second call back. For those who have never been there, the center itself never answers the phone and once you requested a call to schedule an appt they say they’ll call back within 2 days!!!! And I’ve been there before. Anyway, I requested a transfer to a different doctor there, Namita A. Goyal , MD. I wanted a fresh opinion looking at my neurodiagnostic studies. But hearing from you, I’m feeling that if they don’t allow that, perhaps I shouldn’t even go back to him. Can I ask who your neurologist was that was seeing you after your hospitalization. Are you still in Orange county?
March 14, 2017 at 10:22 pm
I was originally admitted to Fountain Valley through the ER, where they suspected GBS and started me on IVIG immediately. They didn’t diagnose me with GBS until a week or so later when they ruled out other possible disorders/diseases. I also had a round of plasmapheresis, which kind of defeated the purpose of getting IVIG in the first place. I progressed regardless and was then sent to UC Irvine for higher level of care. I’ve had numerous neurologists work on my case, including Dr. Goyal. She works with Mozaffar. They are both highly respected individuals and I don’t mean to discourage you from seeing either with my own experience. I think they’re both great; my story just serves as a reminder that it isn’t one size fits all when it comes to treatment for the same condition. The neurologist who followed me last at the subacute facility is Dr. Douglas Chang. His office is in Foothill Ranch. My insurance doesn’t cover him outside of the facility, unfortunately, so I had to find yet another neurologist to work with and my appointment isn’t until April. I will keep you posted about this new neurologist if you’d like. I reside in Orange County. Let me know if you need anything! I’ve worked with several different neurologists as I’ve been pushed around to different facilities throughout Orange County and can personally tell you which ones are good. It’s just a matter of whether your insurance will cover seeing them at their office or not. Personal email: firstname.lastname@example.org
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