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Old 12-09-2013, 01:06 PM
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Marie33 Marie33 is offline
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Join Date: Sep 2012
Location: Long Island, NY
Posts: 180
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Marie33 Marie33 is offline
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Marie33's Avatar
 
Join Date: Sep 2012
Location: Long Island, NY
Posts: 180
10 yr Member
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Quote:
Originally Posted by hopeful View Post
Hi,
I do receive IVIG and have had some success with it. I get one RX a month. It stays with me for about 10 days. I wish it lasted longer. They tried to increase the number of treatments per month but I got too sick from them.
I hope this helps.
Hi Hopeful
Its good to hear that you are having some success with IVIG. Can I ask you what kind of Neuropathy you are be treated for? I was diag with SFN around 2 yrs ago. by skin biopsy. My Neurologist does not think I am a "candidate' for IVIG these treatments.
My SFN is widespread meaning I feel it in my legs, feet, arms , hands, Torso and face and mouth. Ive had a million blood tests, MRIS, you name it. They are calling it Idiopathic for now. My symptoms are pins and needles, a buzzing sensation that starts in my head and goes down thru my body and I feel burning patches on my skin as it travels down into my feet, leaving me with burning feet. Ive developed tinnitus , I never had it before. I'm almost embarrassed to write this because I know it sounds crazy. Its difficult for me to tell any of my family members what I am going through because of the way it sounds. I appear normal and healthy to everybody else, except for the suffering in my eyes. I take 325 mgs Lyrica, not helping much. My question is
does this sound like anything you suffer with. Should I be more persistent for the IVIG. Do you think it could help with my kind of symptoms? I am at my wits end. Dont know what to do or think anymore. This buzzing, tingling and burning for no apparent reason (Idiopathic) is driving me crazy and depressed. Maybe I will make this a new post so other people can read it and offer some advice or help.Thank you for any advice..
Marie
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