Questions CIDP Diagnosis
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October 28, 2010 at 9:14 pm
I was diagnosed with CIDP in April after extensive testing, including EMG/NCVs. My neurologist (who is fairly renowned in the field of peripheral neuropathy) immediately started me on Gamunex, which I continue to receive at the rate of 60g every two weeks. I have had a couple bouts of severe pain in my legs and feet, and I have numbness in my feet. I can’t feel the vibrations from a tuning fork placed anywhere on either foot. I have some occasional hand tremors. However, I have no loss of strength anywhere, no balance problems, no fatigue, no dizziness. I am able to work full time in a very demanding profession. I am able to travel and do pretty much anything I want physically. Unless I am having a flare-up I am virtually pain free, which is most of the time. I read posts here by others who have been diagnosed with CIDP and my heart just goes out to them because so many seem to suffer so much. In fact, there seems to be such suffering with this disease, and my symptoms are so comparatively mild for the most part, that I sometimes wonder if I actually have CIDP. Maybe it’s a mild case. Maybe I’m just lucky. Maybe it will get much worse. Maybe God at this point is only giving me as much as I can handle so that I can continue to work and support my family, if only for the time being. Maybe I’m just scared and in denial, but I sometimes wonder if I really have CIDP. Anyone else ever wonder the same thing?
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October 29, 2010 at 10:36 am
You state that your doc is experienced w/ cidp, so I assume he also did a spinal tap to confirm dx that indicated elevated protein. If you did have elevated protein and your ncv/emg are indicative of cidp readings and you have the other tell tale signs regarding numbness, tuning fork etc, it would seem you do have cidp. I guess another indicator would be if you notice a response to those symptoms after treatment. If you don’t see any difference, then gbs could be a dx. Have you had subsequent ncv/emg to see if the demylienation process continues? Was there aa noticeable relapse after your initial dx that responded to the ivig?
As you mentioned, maybe you just have a mild case. That would be wonderful news. Good luck, keep us posted.
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October 29, 2010 at 11:35 am
Hi Goodney:
I asked my neuro the exact same question. I’ve been diagnosed for two years now. Main symptom is abnormal gait. I can’t stand on my toes due to weakness and that translates to no “spring” in my step. Milder symptoms are some numbness, reduces sensitivity to the tuning fork, weak reflex in ankles etc. My symptoms improved after IVIG but we’re trying to wean me off the IVIG while adding Cellcept. Symptoms are coming back again so we’ll have to try something else probably.
At any rate, compared to what I read on here, I feel extraordinarily blessed to be so little affected that I sometimes wonder whether the diagnosis is wrong.My neuro’s response was that he was extremely confident in the diagnosis. When I mention this forum he responded that fortunate folks like myself usually don’t post much because they don’t really feel the need to. That skews the big picture on the forum of everyone who has CIDP. Evidently there are more folks with “mild” symptoms out there than it seems.
So…. I just keep on counting my blessings and can only wish that everyone on here could have such good luck. Hope this helps. Ron
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October 29, 2010 at 11:38 am
You are getting IVIG every two weeks, that is a very aggressive treatment program. You might find that you would be in much worse shape if all of a sudden the IVIG were removed. I am guessing that you have the relapsing/remitting form which 60% of people with CIDP have. Usually people with this form respond well to treatment & live fairly normal lives. You might find out you have more symptoms when they start to spread out your IVIG, once a month is more common for it to be administered, as it is very costly. I am betting you do have CIDP, especially if the IVIG is working that well for you. Many on this forum have the chronic progressive form, which doesn’t respond as well to treatments.
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October 29, 2010 at 3:10 pm
If you read this forum long enough you will discover this form of autoimmune affects folks very differently. From anoying to devistating. I have been dianosis for two years.I get 40 grams every 28 days. I think this is a low dose compaired to others. 900 mg of neurotin and 50mg of tramadol a day and I’m feeling good. I thank the lord each day that it has not affected me more.I am now stable and kinda know what to expect. My last Neuro visit the Doctor explained little is know about Autoimmune and if they knew more could find better treatments. Some days are just worse then others and normal for lots of things she sees. Keep active and thankful it was discovered earlier rather then latter. This stopped or slowes down the damage that takes a long while to repair. . I use to worry if I would go down hill but currently it seems I’m holding level and may be improving. Again thank goodness for your sucess.
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October 29, 2010 at 6:45 pm
As always, I find your posts so helpful to me in dealing with all this. I try not to overly burden my wife by talking too much to her about my condition, as she is as scared of this as I am. In the end, you all understand exactly what I am going through and have such good practical advice and support. There’s nothing I go through that somebody here hasn’t already dealt with. What a blessing. I don’t know what I would do without you. I do consider myself lucky that to date I have been able to funtion at a high level. I do believe we caught this early. I realize my IVIG regimen is very aggressive at 60g every two weeks. One reason is that I am quite a large individual. Fortunately, I tolerate Gamunex easily, even at that dosage. I am responding very well to the treatment, and my latest EMG/NCV two weeks ago showed improved nerve function. Perhaps that is the best indication that I do in fact have CIDP.
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October 29, 2010 at 10:59 pm
What pain meds are you on during this all? Most anti-seizure meds [prescribed for us with neuropathies] tend to deplete calcium at amazing levels!
Seek out Non-commercial sites such as the NIH URLhttp://ods.od.nih.gov/URL to get a good handle on what works and doesn’t? Save your money for the good products.. check out web sites that don’t sell you ‘super products’ but rather provide you with facts.
Your treatment isn’t as passive as others? And for that be grateful that your doc isn’t a ‘wimp’ from the get go? DO keep a log…maybe on one note pad so you can summarize what you ‘feel’ and how you ‘feel’ before and after each infusion. I do, and I can detail dates times and documentation as to my ‘ability to do ‘things” by days of and after infusions.
Never EVER APOLOGIZE for the amout of IG you get! IT IS NEEDED? Maybe more? Up to your doc to take the tests and get the numbers!
As for IVIG? no s/e’s from that other than an occasional bad infusion… THE meds for pain tho? Do a number on you in terms of bone loss and other nasty side effects. Take especial good care of your teeth! That is the first place MY own problems started to show? And I’m paying big-time for it still! I’ve got ‘dental’ insurance? But it’s just a token pay-off for all the costs. BTW? I’ve got 3 appts in the next 2 weeks for cavities[6], after some this summer for same [6]. It gets RICH! But not for me?
Keep at it and keep faith! Just get a ‘metabolic blood test’? See what you’re missing and get a copy – asterisks [*] indicate what’s high or low! The low we can fix with supplements.
Sounds like you’ve got a good doc working in your court! Just tell him thank you every now and then? These good guys are HARD TO FIND! As you know. -
October 30, 2010 at 1:46 pm
Homeagain:
I take Lyrica 150mg three times a day for pain. When I have had flare-ups, my pain management doctor has had me increase the dosage up to 900mg a day, but I find that huge dosage hard to tolerate due to drowsiness and extreme brain fog. I do take a calcium supplement. It was because of my last flare-up that my neurologist increased my IVIG from 40g every two weeks to 60g every two weeks, which seems to have worked well with the pain also. My neurologist is out-of-network for insurance purposes, and you’re absolutely right, he is a good guy and has helped me immensely. I would rather pay more out-of-pocket than to switch to an in-network neurologist. I don’t concern myself with the amount of IVIG I take, though it would be nice to not have to get stuck every two weeks as I am getting some vein issues. I just worry about the cost of such aggressive treatment and where we are all headed in terms of insurance coverage.
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