Do I have CIDP? Please Help!
AnonymousOctober 23, 2011 at 5:31 pm
in May I noticed I had numbness between my 2nd and third toes on left foot, after about 2 months I noticed numbness and burning in left leg, about 1 month later numbness moved to right toes then a few weeks later right leg, then a few weeks later both forearms, then a few weeks later my face is involved, so I am literally numb and tingling from head to toe, in August when numbness was only in both feet and legs I saw Neuro Doc, many blood tests done all negative, EMG’s negative, spinal tap protein 50 slightly elevated normal is 15-45 so I am only slightly elevated, I am a reactive hypoglycemic from stomach surgery I has 7 years ago, was recently hospitalized where they did a glucose tolerance test and said I was not diabetic although that is a little hard for me to believe, I am having a skin biopsy done on the 26th, the Neuro Doc said he was testing me for CIDP, does any of the above symptoms suggest I might have this disease? Thanks for any info I appreciate it.Jan
AnonymousOctober 23, 2011 at 8:22 pm
Thank you for your response, I did read links on CIDP, I only have some symptoms and my Doctor is not sure what is going on, in the meanwhile I get more numbness every few weeks, as I said before I am numb from head to toe, my neuro is on the fence about CIDP because I have only a slightly elevated spinal protein, is 50 enough to make a CIDP diagnosis? he also wants a skin biopsy, did anyone here have that done and what did it show? I truly am a mystery to all these Docs, I am afraid with all this numbness that my nerves are going to be destroyed very scary stuff. Thanks for all comments! Blessings, Jan:confused:
AnonymousOctober 24, 2011 at 2:14 pm
Hi there & welcome.
Any elevation in your spinal fluid protein may be an indicator that you have CIDP.
Do you still have reflexes?
Do you fatigue easily?
Are you having trouble breathing? Or swallowing?
How is your strength?
Have you had an MRI with AND without contrast of your brain & spine?
AnonymousOctober 24, 2011 at 5:48 pm
Thank you for your response, I will try to answer your questions, I do not have fatigue, I have had an MRI without contrast not one with contrast, my reflexes are still very good, I still have strength however some days my legs feel heavy, (does that make sense?) I am numb and tingly from head to toe and my symptoms are getting worse with that. No trouble breathing or swallowing. I think I am pre diabetic but Neuro Doc does not agree, I am however a reactive hypoglycemic for about 7 years. Do you think a retest on spinal fluid could be called for at this point, my last test was 1 month ago. My Doc is really stumped because I am still pretty strong, I can pick up my 30 lb grand daughter with no problem and I am showing nothing on EMG, I can walk stairs, walk on my toes and heels. My Doc is sending me to UCLA University Hospital but they cannot see me for 3 more weeks in the meantime this numbness and tingling is getting worse and I do hurt. I am afraid if I wait to much longer for a diagnosis that, that is bad. Thank you Kelly any thoughts on this would be greatly appreciated, and I am sorry your little one has to go through this, but Praise God she is in remission I will pray for her to stay that way. God is good in all things! blessings, Jan
AnonymousOctober 24, 2011 at 7:24 pm
Thanks for your kind words. My daughter is still receiving IVIG so it’s technically a medical remission…but I will take it!
I’m wondering why the MRI wasn’t done with contrast. The contrast is what would show any inflammation. My daughter’s last spinal tap (2006) showed normal protein levels (they were previously in the 90’s) but her spinal MRI with contrast showed inflammation from the lower lumbar down.
I think it might be in order to ask your dr for the brain & spinal MRI with contrast while you are waiting to see the dr’s at UCLA. I think a repeat spinal would be a good idea as well. At least you will be doing something & not feel like you are just sitting around & waiting. Being proactive is always a positive if you ask me. When you had your EMG what was the room temperature? Apparently your skin temp can play a part in the accuracy of the test.
It certainly does sound like you have a sensory neuropathy going on. It could be from your blood sugar. I’m hypoglycemic, have been since I was a teenager. I have had periods of time where my sugar got so low that I passed out. Once it was in a restaurant & was very embarrassing. I’ve never felt the tingly all over my body the way you report. I’m not saying that couldn’t be the problem, or a contributing factor, I’ve just never felt it. I understand how scary that must be.
I hope you get answers soon.
AnonymousOctober 24, 2011 at 9:51 pm
My Neuro Doc put a heater on my feet when I did the EMG because my feet are usually very cold the room temp felt pretty normal but I’m not really sure.I will take your suggestion and be proactive while I’m waiting to go to UCLA, thanks so much for your help it’s really nice to know people care.
How did Emily present with this disease? Have you ever heard of anyone who presented with my symptoms?
AnonymousOctober 26, 2011 at 11:22 pm
Slightly elevated spinal fluid protein might suggest CIDP, and it is possible to have a normal EMG early on. The problem is that there are so many causes of neuropathy that it is important to have a very thorough evaluation if the cause isn’t obvious. If you are progressing quickly it might be good to go ahead and get a 2nd opinion at a major neuropathy/neuromuscular disease clinic (The Neuropathy Association [url]www.neuropathy.org[/url] has a partial listing.) Large medical centers with medical schools often have good centers and the faster the diagnosis the sooner treatment starts before disease progression. I had extensive blood tests (30 tubes at once) for rare sensori-motor neuropathies, MRI of the brain and entire spine, full body CAT scan, bone marrow biopsy, nerve biopsy, and 6 EMGs along the way because my case wasn’t typical. Don’t be embarrassed to ask for referral to a subspecialist, it can save you a lot of time!
October 27, 2011 at 9:53 am
I got diagnosed with CIDP early on in the stage of my disease. But I don’t have a lot of the typical CIDP symptoms. No muscle atrophy, no loss of reflexes, no loss of sensations. I only had a numb foot to start with and some tingling in my hands. My neuro did a EMG and NCS right away and they showed moderate demilination. Then I had all the regular tests like MRI, spinal tap, blood tests to rule out other diseases. My proteins in the spinal tap were elevated. So she gave me the diagnosis of CIDP and started IVIG infusions within 5 months of my foot numbness. I have transferred to a specialist at the U of M because I feel better having someone who specializes in CIDP instead of a general neuro (but that is just me). Anyway, I have continued with IVIG now every 21 to 28 days and don’t have many symptoms. But if I spread out my IVIG to more than 28 days my tingling and burning on my hands returns and some sluggish feeling in my legs. But I am told that because I started IVIG so soon that I have a good prognosis for keeping my disease at bay. I can only hope and be on top of things when I feel new symptoms. So see if they will start IVIG and if you respond you can get the diagnosis. My neuro said response to the IVIG pretty much cinched my diagnosis. I refused the nerve biopsy as I heard it can take long to heal and cause permanent numbness where I did not already have numbness.
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