could this be CIDP?
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May 3, 2008 at 3:59 pm
Just checking on opinions. I was diagnosed with CIDP almost five years ago. I received six week pulses of IVIG which seemed to help a lot. With an insurance change came a new neurologist who informed me at the first visit I didn’t have CIDP and she would like to give me water and not tell me to see what happened.. She said I had some autoimmune thing but that wasn’t it. She also said the neuropathy was worse than five years prior and I had lost ankle reflexes that were there initially. She took blood and all came back normal including IGA< IGG etc. However, I did have low B12. I am now on injections for that. My B12 at diagnosis was fine at 668. At diagnosis I had oligoclonal bands in the spinal fluid and abnormal visual and somatosensory evoked potentials. MRI was normal. The problem is that I feel better with B12 and fatigue is improved. but the neuropathy is worse since stopping IVIG. I now have burning pain where as before it was only tingling, numbness, and a dull electrical current feel down my legs with tingling only in the hands. I have not had the horrible board like arm and leg fatigue I had when diagnosed since stopping IVIG. My biggest worry is that the neuropathy will get worse. She insists there is no muscle neuropathy as the nerve conduction and EMG showed "length dependent axonal polyneuropathy. Abnormal spontaneous repetitive discharges from right EDB. Left side was not tested. The study DOES NOT meet any diagnostic criteria for CIDP."
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May 6, 2008 at 12:20 am
So is the final word “negative” for CIDP? And if so, what are your doctors saying you have? It sure sounds like CIDP to me but what do I know? If your’e as confused as me I would ask more questions and ask for answers.
Let us know and be well.
Linda -
May 6, 2008 at 4:38 am
Make sure are getting enough folic acid to balance out the B12. One of my doctors told me too much B12 and not enough folic acid can cause tingling/nerve sensations. That doesn’t really sound like what’s going on with you but it’s something to check into. Many of us with CIDP don’t have “typical” presentations, particularly those of us who end up here. I’m not getting the “water” thing your doctor wants to do – is she talking about giving you a placebo instead of IVIg? I’m not getting the logic in that based on the fact that she says you are worse. It definately sounds like you have some kind of neuropathy – whether it’s CIDP seems to depend on whether they can find something else to call it or not. If not then maybe they’ll call it an “unusual presentation” of CIDP. There are, however, many other neuropathies, even demyelinating neuropathies, that seem very close in symptoms to CIDP but they are either still undefined (like the one they recently found at the pig brain processing plants now called PIN) or called something else (such as MADSAM, or ALS) and have different treatments. If possible try to pin your doctor down a little further. You don’t say whether you are getting any other medications than the B12… if, as she says, you are getting worse shouldn’t you be on some kind of medication? If not IVIg then have her cough up something more appropriate…
Keep searching for answers and if you don’t like the ones you get from this neurologist then move on to the next one in your plan. I went through 3 neurologists and 7 other doctors before I finally got a diagnosis and treatment. The years I lost without getting treatment hang heavy on my mind when I think I might not get that function back… however, once I started getting the IVIg treatment my progress was measurable monthly.
Julie
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May 7, 2008 at 9:42 pm
Yeah she was talking about a placebo effect from the IVIG. Her take is that I didn’t show muscle weakness and this is all sensory. During one phone call when I had asked for something for pain management she told me, “some doctors don’t even treat sensory neuropathy.” She did do numerous specialty blood labs and all were normal. She did catch the B12 deficiency which was huge with regard to how I feel. However, she is taking an “Oh well this is unknown etiology” attitude. She agreed to a nerve biopsy but reading the forum has changed my mind about getting one done. She suggested Lyrica but my insurance won’t cover it. In Tucson we are very short doctors and my plan (Aetna) had very few neurologists.
Also, how often ought I be seeing a neuro? She scheduled no further appointments. Last time I saw her was in early February. -
May 27, 2008 at 3:09 pm
hi sjarfer, when the tests results came back from the spinal tap there should have been proteins in there that would identify gbs and then the length by which the symtons are going on they state that its cidp I would ask about the prteins in the fuild to narrow it down and if your not happy with that see an other dr, dont wait it well hurt you in the end Brenda
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May 27, 2008 at 3:22 pm
I would see another neuro an get a 2nd opinion. waiting for treatment will hurt you in the long run and cause more nerve damage.
keep asking questions. -
May 27, 2008 at 5:38 pm
I would agree with the other posts on this thread. I have been “diagnosed” 3 times with CIDP because I don’t have a “classic” presentation with all of my symptoms. One of the neuros that re-diagnosed me, I was referred to while my other neuro was on vacation. She wanted to do all the tests again because of the presentation. As for how often you should see the neuro, I would go as often as it takes to get something figured out. I used to see my neuro every week or every other week until we got a schedule of medication and IVIG that worked the best. Now I only see her about every 6 months. Don’t settle on an answer (or lack of) until YOU feel comfortable.
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May 27, 2008 at 9:14 pm
Hi
I have a purely sensory neuropathy – diagnosed as CIDP about 4 years ago — after 8 years! It is a pretty rare variant – only a couple of us here with very little/no motor involvement.
The problem with a sensory neuropathy is that it doesn’t necessarily show up on an EMG – you need special tests to be able to get at the sensory damage.
My neuropathy is also very painful, electric shocks, pins and needles, numbness and the like – similar to what you have. It is in my hands, feet, legs and back – it is actually the worst part of it for me…so I take neurontin, oxycontin, tramadol and effexor for nerve pain. I am also taking azathiaprine as a immune suppressant. You need to look for someone who will take this part seriously.
I must say that it puzzled the neuros for awhile. Gareth Parry diagnosd me as a “dorsal root ganglionopathy” originally — and now they have changed it to CIDP. I get IVig once a month – 1gm/kilo over 2 days. It helps with energy; and it used to relieve the worst of the nerve symptoms, although I think that it is starting to loss its effectiveness, which apparently can happen (I have had it for 5 yrs)
The thing is, it may take alot of time to get an appropriate diagnosis, but the treatment choices are fairly narrow for this broad range of diseases, as far as I know – IVIg, steriods, plasmapheresis, immune suppressant therapy and pain meds if requierd. If these have helped in the past, then it surely makes sense to try and keep up the treatment?
It seems like to might make sense to try and find someone who might have abit more experience with these diseases at least for a second opinion? Don’t leave it – as reiterated in this forum, if you have a demylinating neuropathy, the nerve damage will get worse if you wait.
If it is a neuropathy due to other types of things, like vitamin deficiency or heavy metal poisoning – then you need to find that out as well.
Take care and good luck in your journey.
Debs
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