IVIG as help for nerve pain

February 26, 2011 at 9:12 pm

My primary, overriding complaint has been excruciating nerve pain as well as a number of neurologic issues (foot drop, now both feet; stiffness; swallowing problems; paresthesias; balance/coordination;dysautonomia;ataxia; muscle spasms;bladder; breathing challenges; heavily dependent on a cane). As a former marathon runner and fitness instructor I thought I knew pain – but this nerve pain sent me to the ER and left me on the floor crying in a ball. Crushing pain – legs on fire, feet covered in glass shards, felt like I was being stabbed with an ice pick and being plugged in to an electric socket. On a scale of 1 – 10, pain was a 20 and counting.
Long string of pain meds including dilaudid, baclofen (neuro muscle spasms); zofran (nausea/vomiting); frova (migraine) but hands down the BEST pain thing that helped me is IVIG. Other meds cover break through pain but IVIG is THE best thing to turn down the pain. On the two days after I get an infusion I hardly have to take pain meds; as the days get closer to my next infusion I have to use a lot of pain medicine. By the day before the infusion all I do is cry – no sleep at all, just excruciating pain.

My advice to you =get help right away. And get to one of the 7 Centers of Excellence for CIPD. The longer you wait the harder it will be to get your body in to remission. Get help from a leading CIPD doctor (check out the list of top 7 Centers for excellence for names); other neuro muscular doctors will simply not be up to the task of managing your health or your pain. You can get on a list of those premier doctors — it will take weeks to get an appointment — you can keep being treated by your current doctor until then. It is worth your time and effort to get to that top doctor -they have seen your type of nerve pain before and will now how to help you.

Also – get yourself to a Pain Management Doctor with experience in neuromuscular diseases. I was treated by another Pain Management group who were caring but they did not understand the complexities of CIPD and complex neuro muscular diseases. I have a new Pain Mgmt Dr with expertise in neurologic diseases – he actually was the one who pushed me to go to one of those centers of excellence. He was also the one who encouraged me to get on the right amount and type of pain meds to give me a better quality of life.

Note: PT is NOT a good idea, unless you find a neuro muscular disease physical therapist who specializes in nerve damage. Also – hot tubs are NOT a good idea – too much stimulation. A hot bath may help and so might heating pads. No massage, either. Avoid any/all stimulation until your nerves get a chance to heal. How do I know this? I tried and each time it took me days – miserable, endless days – to recover. Top docs have discouraged the above until my legs have had more time to heal. And PS: as the nerves heal they are painful. You’ll need a good team to help you deal with them as you improve.
Diagnosed CIPD and dysautonomia 7/10; suspect Stiff Person Syndrome 1/11. borderline positive for all IGG gangioslides (GM1,anti-asialo, GD1a, GD1b) and high GAD 65. Awaiting results on paraneoplastic antibodies & TTR mutations.
Began IVIG treatment 7/10, pain improved somewhat but still not tolerable. Painful Neuropathy has progressed from right foot to both feet and now both hands. Stiffness accelerated in November, 2010. Current IVIG dose: 25 grams every 7 days; next week increase dose to 15 grams every 3 and then 4 days (2 x/week). Praying that will help pain.