Please welcome Gregg Newman. Gregg's email is greggoo7@aol.com. He is from Pennsylvania and has been diagnosed with arachnoiditis and failed back surgery syndrome.
Gregg says:
"I have had 7 lumbar surgeries over the years. I am now experiencing severe pain, throbing, electrical shooting, numbness, tingling, burning, freezing cold and many other horribly debilitating sensations in both my legs and feet all the time. I was wondering if anyone else has these very painful symptoms and what do they do for relief of them. I've heard Neurontin works well, is there any thing else? Is anyone using Neurontin successfully? What strength are you using? What about those experimental drugs? I would like to be in the trial if possible. Please help me. My pain and other symptoms are getting progressively worse."
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ReplyDeletehi Gregg--
ReplyDeletesorry to hear of your pain/prognosis. my husband suffers the same and would like to share with you what he takes. He does take Neurontin/gabapentin generic, as prescribed by mayo clinic back in 06. He takes 5400mg (9 600mg tablets) daily, he would like to take more --he's 6'4 with a high tolerance to drugs-- but his local GP refuses to go higher. It does help the symptoms of burning/tingling/strange sensations in the legs however he is still mostly bedbound. He also takes hydromorphone for the pain and Atavan.
Wendy and Russ, IL
Hi Gregg,
ReplyDeleteI am sorry to hear you are suffering from these symptoms. I too have the exact symptoms and can not take nerve or anti seizure medications due to medication allergies. I understand they work well for many people. I pray that they help you. I am sorry for the delay in posting, but I am bedridden right now and can not type much due to pain. Let me know if you would like more info. You can always write to me personally.
God Bless you! Cindy Hellman, Co-founder LWA
Hello Greg,
ReplyDeleteLyrica is theonly drug besides pai meds that have made any difference. Mt pain is also very extreme, paralyzing my legs and lower back for days at a time.
Umbilical cord tem cells saved my life from a "terminal" leukemia, and now I believe these same stem cells will be the key to the arachnoiditis as well.
Warmest Regards,
Eric Drew
www.drewfoundation.org