Covid may be messing with my DRG Trial

@lorirenee1 Ughhhhh Lori. I'm real sorry if this trial doesn't work out for you. I know how you've been counting on it with hope. Covid has turned alot upside down. Hang in there lady. Thinking of you and wishing you comfort.
Rachel

@rwinney Hi Rachel, Is that winney with a long or short I? Just wondering!!! Yes, I am so upset about maybe not getting my trial The nurse should call in a few hours to let me know one way or other. I can't tell you how I appreciate hearing you here, because I really do feel so sad about this. I will keep you informed, when I learn more.....Wishing you comfort as well.....Lori

I suspect that many of our friends here on Connect have had or will have cancellations or postponing from doctors. They're finally scheduling face to face appointments here, and I've been able to move 3 appointments up. I''m having an elective surgery, which has to be done at the hospital, with an overnight stay. I don't know how far off that will be. If it doesn't happen in the next couple of weeks, it's going to make some challenges with yard work because there's a 2 week recovery before I can do much more than sit in the recliner or lie in bed.

I sure hope that you will be scheduled soon for your trial, and that it will give you as much pain relief as mine did. Have you gone through all the hoops that the implant requires? It took months for me to get through all of the advance requirements, and I can say it was worth the wait, but it wasn't easy doing all that waiting. I join Rachel and others in prayer for you.

Jim

@jimhd Hi Jim, Thanks from the heart for your message. What procedure do you need that will keep you in the hospital? I hope that it will happen in a timely matter. With this Covid, you never know. I did go through what I needed to do to get my DRG trial, but now, I am considered too old, and a risk for Covid. I am still waiting for a call from my pain doc, or his nurse, but I doubt it will happen now....Thanks so much for your note. So appreciated. Lori

@lorirenee1 Autonomic neuropathy has been increasing to affect various areas, from head to toes. A urologist is going to perform a procedure because of urinary and bowel problems that are probably associated with neuropathy. I have sudden urgent need to urinate. (Think Myrbetric ads)

Jim

Lori, I can only add my sincere sympathy to the other's sentiments. What a disappointment! The virus (or more accurately the government's reaction to the virus) has created an alternate reality for everyone. My heart breaks for you and all others whom I read about on Connect as well as my spouse. Believe it or not I had a weird dream last night about neuropathy and attempting to cure it. Yes I was trying to figure out how to proceed to cure neuropathy in my dream, how silly is that? I know in my gut that something is going to be uncovered eventually that will be an unbelievable breakthrough that will help many people with PN (and possibly other pain related diseases). That is little solace to you and others who are suffering so much right now. One thing I do believe is that nerve pain is happening on a very subtle level and whatever answer comes will likely be operating on a subtle level as well. I just hope it happens soon. Again Lori, I am sorry but please don't get too down, we are all rooting for your drg procedure to come through.

@jimhd Hi Jim, I am so sorry about this. So, it sounds like the nerves control even the urinary tract and bowels. Of course, nerves are part of the control of everything. I hope you can attend to this soon. God, with this Covid, everything is so messed up. Please keep me, and everyone updated. Hang in. I turned utterly crazy from pain last nite, but better today. I have the same pain, but maybe some sleep helped my mood. God in heaven, so difficult.....Stay safe, at least....Lori

@jesfactsmon Awww, Hank. Such a nice message from you. It is not silly to attempt to cure neuropathy in your dreams. I am always trying when I am awake, and so is everyone else that is here!!! Something that a neurologist I had said to me really registered. I was talking to him about stem cell treatment for neuropathy, and he spoke plainly and said, "Nerves are smart. Very smart, and they are hard to figure out. Muscle tissue, bone tissue, etc., are kind of dumb, and therefore, are better at responding to stem cell therapy. You can work with them better." It hit me how little there is for any nerve disease in general, because nerves are so smart, and hard to deal with. There are little effective drugs, and most people do not respond much to them. There are few therapies that make a giant difference. To think that smoking grass is the new suggestion to chronic pain and nerve disease, is a joke. But it is all we really have. To think we send men to the moon, but cannot figure out the nervous system amazes me. But what do I know? So I wait here to hear from my pain doc. He is still trying to find a way to get me my trial. I won't hold my breath. We are all just human, trying our best. I think you are one great guy to work so hard at this, that your dreams are effected by it. It is a great tribute to your determination and love of your wife. Keep dreaming.....you just never know what you will discover...do not give up. Be safe, God Bless, Lori

@lorirenee1 YAYYYYYYYYYYY!!!!!! I will patiently be awaiting your results and hopeful success story. Best wishes, stay strong, stay positive....you can do it! I am here for you.
Sincerely,
Rachel

@rwinney Rachel, Thanks for your utter kindness. No sick body can take that away. I will keep you posted as I recover from the trial surgery, but I am sure I will be here sooner. Rachel, are you still going to Mayo for the three week pain management class? You have not posted about if for a bit, or did I miss something? Love to you, Lori