AnonymousDecember 28, 2009 at 10:00 pm
HI everyone, I’m kind of new here. I’m still un-diagnosed, but it’s complicated. Symptoms are like CIDP. I’ve had neuro symptoms for years — mostly weird neuro sensations like twitches. No one could ever figure it out. Finally diagnosed with some benign condition called BFS. Then this past July, new symptoms started. Burning on my skin [feels like a freezer burn]. Fingertips have this dull, dead feeling when I put pressure on them. Nerve pain in my right forearm.
An EMG showed slight demyelination in my right forearm and sensory nerve problems in my legs. Everything else was normal, except for anti-MAG level and IGM level which were high. Spinal tap showed no proteins. Reflexes are always normal on clinical exam.
My doctor ordered IVIG [suspecting CIDP] back in September, but my insurance denied it on lack of diagnostic proof [diagnosis]. Then I showed up with a positive lyme test at the end of September, but docs are wondering if it’s a false positive because neuro probs have been ongoing for so long. However, my neurologist felt I should be on an IV antibiotic to treat lyme for a month just in case [I’m on that now].
I was scared to do IVIG before because of the risks, but I want to get going with it sooner rather than later. My symptoms got MUCH worse after I had a flu shot at the end of November. I was told by my neurologist that I should think twice about getting a flu shot, and I went back & forth on it for months. I get a flu shot every year because I have asthma, and deal with bronchitis usually for many months each winter. Since I was not officially diagnosed with CIDP, I went ahead and got the swine flu shot, even though I was terrified. I actually had no problems with it at all. Then I got a regular flu shot and my symptoms went through the roof. My hands feel weak and this dead feeling in my fingertips is strange and scary.
I’m going to Johns Hopkins later in January, hoping to get the correct diagnosis. I’ve been on the lyme IV for one week and have three weeks to go. If I’m not better, I want to go onto IVIG as soon as I can, and hopefully will have a diagnosis so that I don’t have to wait on insurance approving it.
Best to all of you out there. I hope that we can find a way through this disease and to good health again.
AnonymousDecember 28, 2009 at 10:10 pm
I hope this post finds you getting better.
The absolute hardest time in any neuropathy is the time spent getting a diagnosis. Mine took quite some time, and the apprehension of not knowing and wondering what it is really wears you down.
Although it is time consuming and frustrating, hang in there and keep on pushing for a diagnosis. they CAN figure it out, and I am sure they will. Then you can get on the business of learning about what you have and try to prepare tp deal with all of the treatment regimens and challenges associated.
I hope your appointments yield results.
AnonymousDecember 29, 2009 at 8:30 pm
I thought I’d almost broken a land-speed record in getting diagnosed 13 months after onset and three neuro’s later? I must say tho? That at times, the testing early on, then later are key aspects – Plus blood and spinal work ups – to confirming a diagnosis in the long run. I did not have to deal with biopsies as I’d met the 7 of ten type of criteria established at the time for IVIG. I admit that I was lucky in many ways, but feel more strongly that IF I’d listened to the first neuro-who’d said it was just a ‘bad neuropathy’, I’d be almost toast now.
You have to take in all that you’ve learned, here and elsewhere, and process it to fit what your body is telling you! I wasn’t internet savvy when I’d persued my diagnosis? I just listened to that BODY!!!
Any good set of docs should do both a ‘CBC’ [complete blood count-in varying degrees] and a ‘CMP’ [complete metabolic panel]. Also, if you are a woman and in your 40’s+? Ask to have a full thyroid panel done? IF your docs listen to you. Try and get copies of these tests, Labcorps and Quest diagnostics are the two biggies that have web sites that can help you learn what these test results might mean-then look further. If you are female going thru pre meno or just thru meno… The thyroid can start to fail then and it’s absence of function can mess one up thoroughly! I mean both because of or in-spite of CIDP or other neuro problems. Just an example of things that go wrong that mite make diagnosis more difficult? Know that it’s never absolutely positively clear-cut! CIDP overlaps A dozen different neuro problems and that’s what makes it all so squirrelly. Have faith in your concerns and don’t let any doc discount any ONE of them! It mite be your key to diagnosis! Keep heart and faith in yourself that SOMETHING is WRONG. Then? Go from there.
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