Why test for neuropathy if there is no cure?
I was diagnosed a little over 2 years ago by my PCP I do have RA and when I would tell my ruhematologist about the pain in my feet he would just blow it off. So went to my PCP and he listened, looked at my blood work from ruhematologist and said it's neuropathy we thought maybe trigged by the biologic I was on at the time. He started me on Gabapentin and at my next ra appt we stopped that biologic and started a different one. Silly me I assumed this would clear up and go away after that. Fast forward to now things have progressed enough that I use a wheelchair when not at home and am on permenant disability now. I read these posts and a lot of you know a whole bunch about your PN but the one common theme I see is there is no fix. Somethings help some with the pain others are just a distraction but bottom line nothing gets better. So why go thru all tests, trouble and money to identify all the details when they don't help?
Interested in more discussions like this? Go to the Neuropathy Support Group.
@lorirenee1 you’re welcome. I am glad to have come across it. I agree we need all the help we can get. This therapy gives us other options. I was thinking about it today when my husband mentioned for us to build a simulator here at home. I started getting ideas about virtual reality helping me with my health issues. I knew an exoskeleton was developed to help people with muscle weakness or paralysis. So I thought why not use VR.
Thank you so much! I downloaded their home page and read some … I will try it. Peggy
You’re welcome @pfbacon. Please let us know what you think of VR and if it helps you. Good luck! Toni
I have CIDP — chronic inflammatory demyelinating polyneuropathy — an autoimmune form of PN that is supposedly treatable. It's considered a chronic form of Guillain-Barre, a "cousin disease" of MS, and nobody know what causes it. It produces all the symptoms others have mentioned here, while destroying the nerves in the legs, feet, arms, and hands. Some people get better on very high doses of steroids (which wreak havoc on the body), some take immune suppressants, and many receive IVIG, as I do. I get a weekly infusion of gamma globulin. It costs a fortune. At first I benefited from it as it relieved my pain. But by the time I was diagnosed I had so much nerve damage in my legs that I have no hope of substantial improvement. I am growing weaker and weaker, and my neurologist doesn't seem to know how to help me. I am headed toward paraplegia and permanent confinement to a wheelchair. I am tired of having to beg doctors for help. I have lost everything to this disease — my career, my independence, my ability to even get out of the house without help. All I have to be grateful for is that I was old when I developed CIDP. Some people are afflicted when young and never have a chance for a normal life. Every form of PN is hell, and it is one of the least studied and understood illnesses.
Hi Sandy, have not seen a post by you in a while, nice to see one pop up today. But NOT nice to know what a horror you face in your life with CIDP. I am so sorry for your debilitated state and the fact that you are constantly getting weaker. I worry about that with my wife as well, who has PN. She can still walk on her own and is somewhat independent within our home. But her pain is getting worse and worse and I am not sure she isn't getting weaker as well.
On a side note, is the Stimware device still helping you keep your pain level down? How much pain do you live with now as opposed to before you got the device? Just wondering.
Best to you, Hank
@sparshall Just so sorry for your illness. Just so sorry. LoriRenee1
@avmcbellar. @lorirenee1 What an idea. I like your idea. Have you had virtual reality experiences? I went on one a couple of years ago…..it was pretty amazing…..not suffocating at all. And it kept my attention as the images came into my reality. Would that be a distraction from pain?
Taking it one step further……what else might distract you? I was in a museum with a room you could go into…about closet size. I still remember …. which means it made an impact.
@lorirenee1, with your commitment to natural solutions for your pain……would this be considered natural?
May you both be free of suffering today…….
@sparshall My thoughts and prayers are with you.
Because: Doctors now insist on getting test results before they give medicine. My GP referred me to several doctors who wouldn't even give me an appointment until I had gone to their lab and taken tests. They say it's "HIPPA Protocol". I say that they are running me around to every department they can and billing my insurance company and Medicare for as much money as they can possibly get out of me. I am looking for another GP but many of them have left this area because … well … they had integrity; they wanted to 'heal the sick'. The others are in a hospital "system". i haven't found any sole practitioners who take Medicare here (Sussex County, Delmarva Peninsula, Delaware) Peggy
Hi Chris @artscaping I am in the process of buying VR goggles to help with neuroplasticity. Thank you for sharing your positive experience with VR. I understand motion sickness may occur at first with the goggles but can be overcome. I will be eager to share my experience using the goggles with neuroplasticity as directed on the website VRxTHERAPY.org Thank you again. Wish you well. Toni