I did forget to mention that I did talk with someone who was being treated at Hopkins for EM; she said the Lidocaine IV only lasted a few hours for her so I guess we all have different results.
CarterDK said:
@LJ
I have a few questions.
1. Lidocaine IVs every 6 weeks were ineffective for you, but Procaine IVs every week are effective? Is that correct?
2. Would you say the Lidocaine was wholly ineffective or infective because the 6 week interval was too long? Did the Lidocaine provide any benefit?
3. With regard to the helpfulness of the Procaine IV, does it stop flares from occurring, reduce the pain and sensation of a flare, or both?
I see you guys talking about Hopkins. I assume that means Johns Hopkins? Are you both in Maryland? I live in Maryland. I was going to go to Hopkins, but Kaiser Permanente found an anesthesiologist experienced with EM who has been successful treating me.
I take Mexiletine, which is the oral analog of Lidocaine. It works very well, but has caused some acid reflux. I was interested in your experience because Mexiletine, Lidocaine, and Procaine are all sodium channel blockers.
Great news for you! I did ask about Mexiletine @ JH (in MD) but they were not willing to give it to me unless they called in a cardiologist as well. I do not have dodgy heart but they really are cautious there. Sounds like you have found a great resource at KP.
I do wonder why my doctor never mentioned to me the potential cardiac effects of Mexiletine. Maybe I didn't fit the risk profile. It was never discussed.
$$$$$$$$$$$$$$ it disgusts me. You know you have EM but the medical establishment makes you jump through the hoops. I saw 5 doctors 2 of which were NERVE SPECIALISTS! DUH, we don’t know what’s wrong with you. Studied my symptoms on the web, found a dr on the Drs list and he gave me a formal diagnosis last Nov 17th. Just having a dr who was educated in EM relieved me so. We’re working on the pain. Fingers crossed. I pray you are doing well today. Star cool.
LJ said:
I sort of went into the Hopkins thing a bit differently than you; didn’t have a referral from a DR. I called in as a patient to get an appointment and had all my records sent to Hopkins; they call you back and tell you the path they want to try first. I went to a spine specialist first off then was referred to Dr. Dash. He sent me to the vascular specialist and then to the pain center. A long, twisted path.
Hi CarterDK - I tried to get my doctor to prescribe Mexiletine for me and she wouldn't do it. I don't have any other medical issues or risk factors. I think some docs are just ultra conservative. I'm very glad it's working for you. Hopefully I'll eventually find something effective for me.
What type of doctor? If your doctor has never treated EM before and you go in asking for Mexiletine, typically used to treat ventricular arrhythmias, it's not surprising she said no. You need to find a doctor who has experience with EM. I see an anesthesiologist/pain specialist. When I first saw him, he didn't think I had EM. He thought I had CRPS. But he still said Mexiletine was going to be the very first thing we'd try. When I responded to it, he said it effectively confirmed I had EM, as EM is caused by defects in sodium channels (according to him). The nuclear medicine bone scan he ordered, used to look for signs of CRPS, was also negative. I've not had any further evaluation in the past 8 months because my symptoms have been stable and controlled.
I just received a call from Mayo clinic. They accepted my case and I am scheduled for June 9 th.
I wonder if they are going to have me stop my meds in order to test.
I’m happy to be going there but also afraid.
That is amazing news Amy!! How exciting for you; please post your progress there. If they do take you off your meds it is just a short term thing and you will feel so much better when you get some good, expert answers. Be proud that you are taking care of yourself!!!
I CAN NOT WAIT to find out what they’re going to do with you!
Still having massive side effects from Gabapentin ( drunk as a skunk) I’m sure we’re all waiting for June 9th to come quickly.
Amy said:
I just received a call from Mayo clinic. They accepted my case and I am scheduled for June 9 th. I wonder if they are going to have me stop my meds in order to test. I’m happy to be going there but also afraid.