derekAR

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  • derekAR
    January 27, 2018 at 6:01 pm

    I thought I would put a close to this thread. The new neurologist I saw ran my NCS/EMGs again. They were normal. We found out the last neuro tech put in the wrong data for my height etc and since I’m far taller than average, it was falsely latent on the NCS. Did a skin biopsy for epithelial nerve fiber density, which was positive for severe small fiber neuropathy with some likely autonomic neuropathy too. Did more focused labs, and we discovered I have celiac disease, with almost no GI symptoms, hence the nearly 3 year delay in diagnosis and misdiagnosis. Started a gluten free diet and my symptoms are 90% better after 2 months. I thank God every day I got that third opinion. Getting my confirmatory small intestine biopsy soon, but given my sky high antibodies to gluten and vast improvement on the diet, my neuro already discharged me. So, don’t forget to remind your neuro to do a skin biopsy for small fiber neuropathy, and might as well check celiac panel as well if you are still undiagnosed with CIDP symptoms. CIDP is 1 in a million incidence, versus celiac being 1 in a 100, so it’s prudent to rule out. Oh, and those steroids I was on gave me gastritis according to my GI specialist…

    derekAR
    August 19, 2017 at 4:11 pm

    Funny enough, one of my patients a week ago was a rheumatologist who happened to have been treated for multifocal motor neuropathy, successfully so with IVig. He gave me a referral to a guy that Dx him in 10 minutes on the first visit, he’s double boarded in electrodiagnostics and neuromuscular disorders. Some of the patients he talked to in the infusion clinic took up to 7 years for a proper Dx according to him. A nurse infusionist I had as a patient not long ago said the same thing on the time to Dx. Sad.

    derekAR
    August 19, 2017 at 4:04 pm

    I’ve had a thorough battery of labs. B12 was over 800. Everything came back normal except my ANA being 1:80. I had a CSF study 2 weeks ago, and all was normal except elevated albumin (37, upper limit is 25) and total protein 45, being the max upper limit of normal but also the lower limit for a CIDP diagnosis. I was tapered off the prednisone completely by the neuro I saw in the hospital here since my fasting glucose went up to 200 and other undesirable side effects. I’m waiting for my neurologist to get on the ball and start IVig and switch to SQig after a loading dose, and if he doesn’t I’m seeing another one that I’m sure will be more aggressive. Meanwhile I sit here with burning extremities and a numb face and mild foot drop while he does nothing.

    derekAR
    July 10, 2017 at 10:12 pm

    So no, i have not had an LP yet. I actually ended up referred to an ID specialist instead to rule out lyme back in March. Well i dont have lyme disease at least, but also no LP. I saw him again the end of May, and he explained he’d prefer to hold off on an LP due to my mild and atypical presentation, since it may show nothing yet is an invasive procedure. Then i call in complaining of my worsening paresthesias and weakness, and he rxd pred. Mind you CIDP is still on the top of his differentials, which I’m taking his word for despite being so asymmetrical and minimal on the motor symptoms (he never mentioned the lewis sumner subtype). This is a pretty piecemeal way of doing things in my opinion. I have a university nearby doing a CIDP clinical trial but it’s 6 months to see a neuro sadly. I’m stuck for now.

    The last 4 days on pred have been unbearable, so much i want to initiate a taper now. My left foot up to my knee and left hand up to my elbow burn worse than before up until the evening on and off. Frankly, despite having access to systematic reviews and meta analyses, and other doctors at my hospital, there is no good explanation of how the symptoms actually onset or feel from a patient perspective, probably due to the rarity. Nor did i read anything on temporary worsening of symptoms on treatment from neural regeneration which can occur with other neuropathies. It’s odd, as it’s like sudden yet creeping attacks of burning and weakness periodically. It’s as if what I’d imagine a TIA feels like only somewhat slower, if not for the fact that was ruled out and i have no risk factors, and the sometimes bilateral nature of it. Also i figure after a year i would have stroked by now. Very disconcerting.