First time poster, longtime reader
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April 30, 2013 at 8:30 pm
Hi all,
I’ve been reading a lot of the posts and decided I would reach out for some support.Here’s my story:
Nearly two years ago started having trouble typing with my right hand. Then my left arm started to grow weak and lose muscle.
Got routed to a neurologist. EMG showed issues only in the neck and arms, legs and back are clear. Spinal tap was negative. There was some minor conduction block on one. He initially diagnosed it as multifocal motor neuropathy.Started on IVIG about six months later (due to insurance haggling). Also started to have pain in my arms and tingling in hands and feet. I have reduced sensitivity in my fingertips and toes.
I’ve been through four cycles of IVIG, and have still lost strength, now also in my right arm. IVIG helps for a little while with the tingling and pain, but no progress on the strength.
All along my neurologist has kept ALS on the table, which has of course freaked me out. He did another nerve conduction study to try to diagnose CIDP, but they came back normal. He said it was possible the IVIG helped.
He took me off IVIG and I just started steroids.
I now have pain in both arms, and tingling, especially in my hands and feet. I haven’t lost any strength in my legs nor do I have any issues above my neck. It’s all it my arms
My wife and I are staying positive that this is not ALS due to the asymptomatic things I experience. This is been a long two years and I’m just looking for some extra support.
Also, has anybody been diagnosed with CIDP without conduction block?
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April 30, 2013 at 9:50 pm
There is a great deal of variability with CIDP and other neuropathies. If your neurologist can’t make a definitive diagnosis yrt, it is likely because your symptoms are atypical. Be patient, and try to avoid self-diagnosis, and especially to avois assuming the worst.
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May 24, 2013 at 4:05 am
hello, so sorry to hear of your troubles.. I am negative for CIDP workup as far as the EMG/NCV.. I was 30 years old when I developed symptoms, and now about to turn 33.. the first dr I saw told me he thought it was ALS (i was a new mom of 2 kids under 2 years old, talk about freaked out)..
once he did the emg/ncv, they said defintely not ALS.. i did have one area of demylenation at that time on the knee .. esp with the GI symptoms and everything else I had associated with it.. I continued to worsen with all limbs affected – swallowing and speech.. everything! I ended up at the ALS university clinic here.. normal emg/ncv.. they say as bad as my weakness and symptoms were ALS wound show up at that point on emg.. anyhow, they did do a skin punch biopsy (epidermal nerve biopsy).. it came back very abnormal – dx a non length dependent neuropathy.. have they tried that with you? are you at a major university neuromuscular clinic?
I am on IVIG, as I crashed, coudlnt’ breathe and my PFT’s were low.. almost 2 years ago now.. I have some progression in some areas and am way better in most with the IVIG>. it’s scary when you dont’ have control over your body, no one knows why, and you don’t know what your future holds- ESPEcIALLY when something like ALS has been brought up.. MY thoughts are with you, It’s not easy! -
May 28, 2013 at 5:54 pm
Hi bny806,
Thanks for replying. Yes, I am seeing a specialist at Emory University. Had another EMG and nerve conduction done last week. EMG was bad and the arms (but we knew that) and the back was clear and the legs had a “little bit.” Not definitive for ALS.Next step is there biopsy in July. The doctor says that the pain I have does not fit ALS, so they are working hard to explore that.
Mentally, this is been a long two-year ordeal. As I’m sure you know it is quite difficult to have that hanging over your head. I am remaining positive and the fact that I can take care of myself although I’m a little slower than I used to be. I also have two young boys that keep me positive as well.
Glad to hear that the IV IG working for you. That is great news!!!
Thanks again for replying.
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May 28, 2013 at 10:17 pm
There’s no question that neuropathies of all kinds are an ordeal, and the uncertainty of not having a definitive diagnosis is an extra challenge. The nerve biopsy is helpful in cases which are difficult to diagnose, so it’s appropriate that you are having one done.
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July 17, 2013 at 5:11 am
So sorry for you Trubles! What can I do for you? You are an optimistic man！
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July 18, 2013 at 2:21 am
After 16 years of this stuff, I say just try to keep optimistic! There is not much that can be done in the USA. I pray that another country would breakthrough with some help! We are bottom of the totem pole, so to say, but we gotta keep the faith!!!
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