I do not have CIDP after all

Well, I finally managed to get referred to a neurology clinic, and get a complete workup. The good news is that I do NOT have CIDP, I am relieved to say. They would have attributed it to diabetic neuropathy alone, except I went armed with copies of reports documenting a well-advanced neuropathy in 1994, together with lab reports for the previous 5 years showing that my blood sugar was normal at the time. So they settled on “idiopathic small fiber neuropathy”, with possibly some overlay in recent years due to the diabetes that appeared in 2003. My other symptoms (labile blood pressure, tachycardia, etc) they say is most likely an autonomic neuropathy which is common with diabetes, OR could be part of the original idiopathic neuropathy, OR could be related to the fact that they severed a large part of my vagus nerve as part of my esophagectomy in 2006, OR “all of the above”. The bad news is there is no treatment, except for somewhat inadaquate treatment of the symptoms. While my blood sugar has been in good control all these years, it has not been perfect; my A1C has hovered just above 6 most of the time. They said if I can tighten up the blood sugar control and get the A1C down below 6, it may help to prevent any further advancement of the neuropathy if it is being affected by my blood sugar. On the other hand, if it is all “idiopathic”, I doubt that would help much. And if the severed vagus nerve is a contributor, that won’t help much either. But all of my inflammatory markers were negative, and the electrophysiological testing indicated no long fiber involvement. They put me on 30mg of Cymbalta, but I’ve only been on it for a few days and I can’t really be sure it is doing anything yet.

Well I guess I’m glad you do not have CIDP (for now) . Until there is a definitive test for CIDP, competent doctors to diagnosis it, treatments that really work not simply mollify the symptoms temporarily, we all have only each other to lean on. So, here we are. Lean! BobN

Judmilla, that’s great news, as BobN says “for now”. But just because your diagnosis has changed, please continue to feel very welcome here. You have gained an understanding and an empathy for CIDP sufferers and your presence and contributions are still valuable.

Glad you posted! Hang in there, and keep hanging out here!

Seenie from Moderator Support

Thank you both. They tell me the tests were definitive; I have purely small-fiber neuropathy, no large-fiber involvement at all, no inflammatory process going on, and so on and so forth. Of course, that “idiopathic” means there’s a great big question mark hanging over me for the rest of my life. I had been hoping to get that diagnosis of “diabetic neuropathy” off my records, but they are insisting that I probably have diabetic neuropathy ON TOP of some original idiopathic neuropathy, with an implication in there that I’m being sloppy and careless about my blood sugar control, which I’m not. I’ve had excellent control ever since it first started. And I never was a junk-food junkie; I had hereditary high cholesterol, and they put me on huge doses of Lipitor, which is now known to cause diabetes, especially in women for some reason. My diabetes came on like gangbusters after one year on Lipitor, and YEARS later than the onset of my neuropathy. But at this point, I suppose it doesn’t make much difference. It is what it is. It is the same type as diabetic neuropathy, and will have the same problems, and the same symptomatic-only treatment, so I guess arguing about the cause is academic. I will do my best to tighten up my blood sugar control, but it is already good so there isn’t much wiggle room for improvement. I find it interesting that my brother also has neuropathy, but has never in his life ever had even a hint of diabetes. He hasn’t had a neuro workup, but I can’t help but wonder how they would explain his neuropathy.

Hi . I would keep reading about your disease and make sure that the dx. is correct .
My CIDP came from Schering Plough Alpha 2B Interferon . I am a text book case . I too have all the tests and yes I am CIDP .
The doctor never diagnosed me because I was waiting on pension . But in the end I am glad that I was not rich because the treatments for CIDP sound Extremely Horrible .
Keep your spirits up and remember that you are the one feeling what you feel , what you know to be real . And never be afraid to do what you feel is right even if it means going against med personnel opinion . Rita

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Judmilla, please don’t give up! Managing the roller-coaster of the neuropathy world is difficult, trying, and frustrating but knowledge is power! Reading and getting answers from the Dr. may be exhausting but worth the work. The questions like: What else could it be? And What is your ‘plan B’ of treatment" or Is this treatment evidence-based? are questions that are not heard often enough from patients in the examining room!
You raise valid questions about the origin and treatment of you Diabetes. If we want answers, all of us need to press the doctors for answers that make sense to us too. Doctors tend to adhere to diagnoses once made. If we think they’re wrong, it’s up to us to say so!
There’s a book “How Doctors Think”. I highly recommend it to everyone on this site.
But, like politics, we should work through the system not go off half-cocked taking ill-advised treatments, stopping doctor visits, etc. Unless someone possesses special credentials or expertise, take their advice with a grain of salt.
Good luck to a better life that you control, BobN