Reply To: Support Group in NYC ??

August 26, 2013 at 9:09 pm

This is my first time posting so please bear with me, as I am going to ramble on a little. First of all, I live primarily in Eastport, NY but have an apartment in NYC, which I reside at approximately 2 or 3 days during the week. I was recently diagnosed with CIDP, but have had symptoms for at least 6 years. I would assume my case is slow progressing, but has recently it has accelerated. Three weeks ago I had my second EMG (first one 3 years prior, but did not follow up with a neurologist-my dumb mistake). I have experiences severe numbness in the balls of my feet and some in my toes. I had tingling up my right leg into my kneecap, which was experiencing numbness as well. Maybe it was just a coincidence, but after having the test I began to notice the muscle loss and weakness in my feet, calves and knees. I felt as though my legs would buckle for a second and I would just drop (but didn’t). Fortunately for me, I do not experience pain (occasionally a shot of pain, like a shock up the outside of my leg), but overall pain free. I have noticed my hands looking more web like, and realize there is muscle loss there as well. I still feel like I have very strong hands, and my legs are thighs are strong as well. However, tests results showed significant nerve damage and muscle loss – and was diagnosed with CIDP. Other symptoms included having Raynaud’s disease (which I have had since I was 20 – now 66), hair loss on the outside of my calves, hammer toes; which were said to be in the same family as CIPD. I mention this, because the word should get out to the medical community that common symptoms to the disease, may lead to earlier diagnosis.

I started IVIG treatments last Thursday and Friday at NY Presbyterian Hospital (my doctor is on staff – Assistant Professor of Neurology and Neuroscience at the Peripheral Neuropathy Center of Weill Cornell Medical College. I had little side effects from the two treatments (think I received 450mg but not sure) other than the second day with a slight headache and fatigue. Its probably in my head, but I feel a slight reduction in the numbness in my feet, but more in my legs and certainly more muscle fatigue in my legs. I’m having two more treatments this coming Thursday and Friday, and then every other week (for one day) for total of 3 months. Obviously, I am very concerned as anyone with CIDP would be, and hopeful the IVIG therapy works.

I haven’t had time to feel alone, because I have been to fearful of what this could lead to. However, I am beginning to get my “arms around it” and feeling more positive. If anyone would like to talk, write or get together to talk about our condition, I am available. I don’t know the protocol to exchange information, if you are feeling alone, I’d like to be there for you in anyway that would give you comfort or just someone else to share with. As you can see, I certainly had the need to share. Just writing everything down and sharing has been a positive for me. I wish you all the best and hope you improve in health and happiness.
Warmest regards,