Guest guest Posted May 6, 2011 Report Share Posted May 6, 2011 Connie, thanks for the info on IVIG. We've had a couple of members on it, but I never understood how it worked. Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: conaugusta@...Date: Wed, 4 May 2011 19:53:46 -0700Subject: Re: New to Neurosarcoidocis I'm sorry to be answering so many days late, I have not been on my email in a while. Welcome to you and your husband, although I am terribly sorry you even have to know we exist. About your question my nerve damage is being helped by IVIG therapy because my nerves in different parts of my body are demylenating. The IVIG does help, and I use Lyrica to help control the stabs, pins and needles. Believe it or not, along with the Lyrica I use Maximum strength Aspercreme to take the rest of the edge off. I had a nerve biopsy, so I know what the damage is. Ask your doctor about the IVIG Therapy, it is an IV infusion (mine is once a month). It takes about 3 hrs. Also, has he had any testing of the lumbar/sacral spine, mri, ct, etc. There are also several spinal issues that can cause the something called radiculopathy from the waist down (tingling, stinging, numbness). It would have to be a bilateral issue to cause the extent your husband is dealing with. If it is a spinal issue, there are times when they can make corrections that will relieve the nerve impingement. If it is nerve damage, at least maybe they can stop or limit the progression, and make him more comfortable. To: Neurosarcoidosis Sent: Tue, April 26, 2011 3:41:51 AMSubject: New to Neurosarcoidocis After suffering for some time with so many different symptoms my husband finally got diagnosed with neurosarcoidocis last year. With the many different symptoms he is having the worst one for him is the tingling like pins and needles from the waist down to his toes .None of his medication is helping at this time and i was just wondering (hoping actually) if anyone has had any improvement with this symptom. Any suggestions or advice would be greatly appreciated.thank you Quote Link to comment Share on other sites More sharing options...
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