Hi Joan! Good to hear from you again but hate to hear what you are going through. I finally got into Duke and the Duke Doctors did a really nasty EMG/NCV on me. Have had several of them but this one was the worst one I have ever had.
My CIDP is related to my Lupus. And lucky me starts IVIG Rituximab tomorrow. Dread it! But if it will make me better, I’m not going to complain. I hope!
Bill may be having some memory problems because of his illness. I know with my illness I get forgetful at times. Brain fogginess!
That quiting smoking! He has to get ready for that sugery and the stronger he can be the better off his recovery. So he really needs to quit! But getting a person to quit is hard doing.
I am so glad you came back in here. I have missed seeing you around!
Just wished things could be better for you and Bill! Certainly not easing facing right now! Hugs Joan! Glad to see you back!
I still have Lupus and still have the CIDP issues but the doctors are hoping that my thyroid issue was what has been causing my problems. I know since my surgery, I started sleeping much better and am enjoying that. No longer have the tremors and shakes and anxiety attacks. Fatigue issue has eased up some. So I too am praying this is what caused the CIDP. They still want me seeing the doctors at Duke in November and get checked just in case there is still a problem. Plus we have to rule out Lupus causing the CIDP since I had nerve damage problems before with the Lupus. And then there is also that possibility that I have another problem just lurking and each time I get sick it attacks my nervous system. So now it’s a rule out study on me!
But I am feeling much better since I had this surgery! Alot better!
Still not 100 percent back to normal and can tell I had alot of damage done to my system but am feeling much better. Just slow trying to heal up. My head feels better too. Not all dizzy feeling and feeling like I am going to pass out like before.
The only thing I see right now is that nerve damage kicked my butt and really did some major damage. Something has stopped though with the nerve damage. Not getting the vibrating sensations, numbness is still there but the tingling has stopped. My body is weak feeling though. Damage got done and now I have to start working on trying to get fit again. Building up my strength! I have been trying to exercise some but see myself getting worn out really fast. Last night I tried something that might help. Doing exercises while laying on the sofa. Trying to get my legs stronger. Looks like it’s going to be a winter trying to build my system back up. My lupus will always be there and never go away. But I handled that okay.
I have feelings in my hands now though. Got my hands back. No more fire burning pain. Arms are still weak but need physical therapy. So I am doing the physical therapy now. Hopefully in November when Duke see’s me they will say it was the thyroid that caused this and then I am on the road to recovery! I hope! That thyroid gland can mess a person up if it gets a problem. Now I know what it’s like having problems with that. It to me was worse than Lupus! I guess my body got used to having Lupus and I was able to cope with it! But that thyroid on the other hand that was enough to make me go crazy, insane and was depressing! Glad they took it out! Taking out my tonsils too… my husband told me I’m not snoring anymore! Yeahhhhhh!
I go in on Wednesday Sept. 17th. . will be posting about my bad day yesterday. Nothing got done and I ended up being sick all day long. Can’t wait to hurry up and get this stuff over with. I thought last night I was gonna have to see the ER again and I hate that place! Literally hate it!
I know this sounds mean! But when I quit smoking my husband still smoked. It stunk so bad. One day he woke up and all the ashtrays were gone. I threw them in the trash can and told him he could not smoke in the house anymore. LOL! So his first two weeks was going outside. And I picked it when it was cold outside. Nobody likes putting on a coat just to step outside and smoke. So I put my foot down there. A week later after the house was aired out, I took a few things out of his closet and let him sniff what his clothes smelled like. He was like yuk!
Told him he wanted me to quit and I could not stand the stench smell anymore. Then a two weeks later, I tossed his pack of smokes in the trash after soaking them in water. So they were not smokable. Ohh it made him mad, but after a week of fighting and the less ciggies he was getting.. he finally gave in an gave it a shot of trying.
I can be a $^$^^ to live with sometimes! He stayed on my case about smoking. And I quit! So then it was his turn. He was a stubborn old bull but I made sure I would not make it easy for him. Now we are both smoke free. All that ciggie is… a pacifier! After I quit, that is what I felt it to be. Hope this helps! Maybe it’s worth trying. Start out by no more smoking in the house! Toss the ashtrays! Maybe that will help. Especially when it starts getting cold. Not fun smoking outdoors.
Hi Joan! Bless your heart! I wished I could be there for you right now and just give you a big hug! You have been so wonderful being a caretaker for Bill. I have the CIDP of unknown etology too and am praying they figure me out soon.
Seeing me getting sicker too and am worried myself. It’s not easy for both parties either. Husband or wife! I will say a huge prayer for you tonight and hope that one answer that you and Bill wish to see becomes a reality. But no malignancy! That I won’t pray for! I will pray for Bill to get well again! That is my prayers for you both.
I just feel so bad for you right now! You both have been through so much! Keep us posted! Hugs
Hi Joan! Bless your heart dear! You sure are going through alot right now and Bill too! I will be keeping you in my prayers and sure hope they find out what is going on and have some treatment plans for him. Will say some huge prayers today. Good luck today and I wish you both a really good day today!
Hi Joan! Good to hear from you again! I hope everything went well at Cleveland Clinic. Have you in my thoughts and prayers today! Yes! Those little ones are special having. So glad you got to see a few of them just recently. Let me know how things went at the clinic and I hope it was good news and not bad news! Hugs
The chemo drug Imuran can cause the liver some damage and also sepsia! They always do labs on a frequent basis for chemo drugs especially those that can cause liver problems.
An MRI can detect MS, Collegen Vascular Diseases like Vasculitis and Brain Tumors and several other diseases. White matter lessions on the brain can mean several things. But the MRI is a very good diagnostic tool and can also rule out several diseases or suspect a disease.
Has your husband had a bone scan? The reason asking, is a friend of mine had the CIDP in a severe form like your husband. He had a benign tumor and they found out that was causing the CIDP. A year later the man was back to walking again. Using a cane and back driving. I would even ask for both test. That would rule out cancer and the diseases I listed above. I hope your husband gets well soon and I wish you good luck this year!