Hi Claire! Nerves can regenerate but it takes a long time for them to heal. So many centimeters a month. But with certain diseases nerves can cause inflamation and once given medications like prednisone those nerves can start refiing again around the dead nerve and sometimes they can grow new nerves around the Mylen Sheath. Different diseases can cause different reactions to the nerves. Just depends on what you have going on with you. Somebody with B12 can get nerve damage and if caught in time that nerve damage can heal up and the person starts getting better with the B-12 injections. Just like GBS the attack can be mild or severe. Severe attacks sometimes leaves that person with nerve damage the rest of their lives with some improvements but not 100 percent back to normal. And then some get completely normal again! Just depends on the person and how severe they got! Some had severe cases and later in they were just like normal again with no problems! So each person can be different. Hope this helped some and I wish you my best on the MRI report! Good luck!
Linda H

Hi Claire! I tried that Lyrica out too after being on Neurontin. Even stopped the Neurontin and to me Lyrica was a junk drug! It didn’t help me one bit. Just beware of the Lyrica. You might do okay with it but I have tried all kinds of drugs for this CIDP and Gabapentin it is! I tried Elavil, Tegretol, Cymbalta, Effexor, Busparine. And a few other drugs. Nothing seemed to help me. Now I am on Gabapentin, Lexapro, Clonazapam, Ibuprophen 800mgs and the Tylenol with Codiene. Along with the other drugs I have to take.
That Ultram ER is some strong stuff! I tried taking it but it made me sick! My biggest problem with certain drugs is that I am hypersenitive and have bad reactions. Especially the ones that have the extended relief! They gave me Lomitol for my stomach pains I get and that makes me vomit! Elavil made me vomit and I am allergic to Vancomycin. Took the Ultram ER and was up for 3 days! But what works for one might not work for the other. I am glad they put you on the Ultram ER. I know several people that take it and they are doing great on it!
I remember when they finally gave me something in the ER one night. 5mgs of Zanax. I suffered for months and months on end trying to get diagnosed with this Lupus I have. I was in that ER crying in hysterics begging them to not let me suffer anymore! And I was suffering something bad! Lupus then was attacking my nervous system and I had tremors like parkinsons. My body all over was tingling and buzzing and it was in my head and neck area. They gave me that drug that night and it was instant relief! They then wrote out an RX for 2mgs at bedtime which helped but then during the day I needed relief! So they gave ,25mgs 3 times a day. When Gapapentin came out they weaned me off to the .25 mgs a day in the morning time. And that Gabapentin really worked. I have had to increase the dosage though but don’t want to switch to any other drugs because many of them are helping me out.
You may have some trails and errors at first trying to get the right recipe to help the pain but that is where you and this PA might be able to get you relief! I am so happy for you right now getting something to help you out. I’ve been there and it’s not fun suffering in pain and not being able to sleep. It wears the body out bigtime and made me sicker! Good luck Claire! I hope this regimin works for you and I see that you got good sleep and start feeling better! I sleep pretty good now! That makes a world of difference! Hugs
Linda H

Hi Claire! I am right now taking less Gabapentin than you are. Only 1800mgs a day. I take one every 3 hours during and within 18 hours. I sleep pretty good at night now and my nerve damage really does not bother me until the mid evening hours Then I go nuts. First thing in the morning when I wake up and every single day starting at 3 until bedtime. My script though has me for 2400mgs a day. But I am sleeping at night missing 2 doses. Would probably be on a higher dose if I was not on so many anti inflamatories. I take plaquinel too and once stopped it because I didn’t see what it was doing. After a few months the pain kicked in my joints and I felt like a twisted pretzel. So now I stay on the plaquinel. I feel for your aunt that has this disease and hope she is doing well. I too had an aunt with it. It at times can be a hard disease to diagnose. For me it took several years. Doing only but nerve damage. I had the symptoms though but never heard of lupus before and was young when I started getting sick. I didn’t know my migraines were affliated with it and the rash I was getting, I thought it was my soap or washing powder. LOL! Then it dawned on me these symptoms somehow where related and I started keeping a diary of everyday events. Before I got sick I only took regular tylenol or aspirin for headaches and pain. Never really took much of that either. Each morning is the struggle swallowing those pills. Takes me a half hour just to swallow pills. I try to think like you think! That there is somebody 10 times worse than I am. During the day when I feel horrible I still get up and try to achieve something even if it’s only a small thing just to say I did something. But when I feel decent you can’t keep me home. I get out and do things. Shopping mostly but enjoy it while I can! Saw that lady on TV that had her face shot off by her husband and saw how beautful she was in the before photo. A for years she has had no face! She looks horrible right now because of the swelling but am so happy that medicine was at least able to give her a face. That story made me cry when I saw her! And when you see something like that you say to yourself that their are others in far worse situations than myself! Those accidents on motorcycles are nothing to play around with and I pray your husband gets better. My oldest brother was killed at the age of 19 by a motorcycle. It was the other drivers fault but it dosen’t matter who was at fault. Somebody that was so young is now gone because of it! I have met quite a few people that got injured too and some have permanent damage.
Hope you have a beautiful day today with lots of Love and Joy! Hugs
Linda H

Hi Claire! I know it gets pretty darn frustrating when one doctor becomes your worst nightmare! I had the same experience last year and did switch over to new ones. I am so glad I did. I am relieved to finally have the ones I see now listening to me. Makes a big difference. I hope and pray you get lucky and get to see someone that will finally listen to you. I’ve been there and it’s hard trying to tell your doctor how bad off you are and they give you something that does not work. I too went back on Neurontin because the other stuff they gave me won’t worth a flip. But I am on other meds too that help because of my illness! Wished I didn’t have to take any pills at all. Before I got sickly, I barely even took aspirin let alone anything else. Now I feel like a medicine cabinet! Hugs! Praying something good comes your way!
Linda H

Hi Claire! Normally when a person starts complaining of numbness and tingling the doctors end up doing a number of labs on their patients. And most of the time they order MRI’s just to make sure the person does not have MS or White Matter disease or the typical easy to diagnose disease that will show up in Bloodwork.. So many diseases can cause Neuropathies! And yet there are some Neuropathies that never ever get diagnosed as having any disease at all. That person ends up with an unexplained Neuropathy. CIDP normally shows high levels of protien in the Spinal Fluid. I think GBS also but not sure about that one or not!
And yes it does make you wonder why so many are getting sick. Processed foods, pollution or is it the Ozone Layer. I guess we will never know what causes many of us to get sick. If I had my choice just like many others in here I think we all would prefer to be healthy individuals. I honestly think alot of our diseases have been ariound much longer than we think though. Back in the olden days they did not have the medical technology like they did many years back. Now giving many patients a name instead of unknown. Too many of us suffer and have to live this way the rest of our lives. I know I will never be cured of Lupus and CODP. But I just deal with it the best I can!
But I do wonder what causes my disease and why? Just glad they have medications that help to ease the crunch on what we have. If they did not have those medications, I would probably either be dead by now or praying I would die! LOL!
And sometimes even with the meds I feel like a mess! I have my good days and my bad days. I think we all have them. Just wished they had a cure for each and everyone of us. That is a dream I would love to see. No more IVIG’s no more Chemo drugs. Just a pill that says cure instead of what many of us go through day in and day out.
Auto-immune diseases though can do many things in alot of families. One that has Lupus might end up another family having Rheumatoid. Another person in that same family may end up with another disorder in the same family but have a different name.
I read an article once that really shocked me. It claimed in that article that 1 in every 3 women will develop a Rheumatoligical disorder. Wow! 1 in 3 women. What about the other 2 women? There is cancer, heart disease, diabetes and many other diseases. So if 1 in 3 get a disease makes you wonder how many people in this world are really healthy.
I hope that they get your CIDP in better shape and you start feeling better soon. Will keep you in my prayers! Hugs
Linda H

Hi Claire! Keep a diary of your daily activities to give to him. Write down your pain levels on a scale of 1-10 10 being the worst. Write down the things you can’t do because of pain. Nights you can’t sleep etc. And please do not mention going out buying the drugs on the street! You will never get another RX for anything addictive. Once they put that in your records it stays in your records. I think a diary log each day before seeing him and having a family member going in with you your next visit is the best bet! Hope the Topomax though works! Hugs
Linda H