earHi ladies and gents.. so I was diagnosed last y They said I may have hCIDP but didnt wanna do any treatment yet. Well now fast forward a year and all my symptoms are back, plus some I didnt have and I'm so frustrated. I gave the walker up in February and now I need to use it again. I'm waiting for an appointment with a new doctor and everything and I feel hooeless and depressed. Ivgained 42 lbs during my 14 months in the nursing home. Ive lost 15 kinda yoyo 5 lbs . Everythings going wrong. My arms werent even involved the first time and now they are weakened. I'm having swallowing and choking problems that I never had before. The speech therapist said I was aspirating because of the GBS. I just want to sit around and cry.. anyways thanks for letting me whine
I know your concern I have been doing IVIG treatments over 2 months. Can’t walk without sticks or walker. Hands are weak, have drop foot on both feet. PT helps but going to ask if water aerobics might help. Just wish hubby would realize I can’t do things as before. Good luck
Hey Country Girl. I live in Decatur, Al and have had my diagnosis for more than 2.5 years. I have gone from wheelchair, to walker, to cane and now walk unassisted. There is light at the end of tunnel. I credit IVIG with my recovery.l. I have a 4.5 hour infusion every four weeks. My reflexes were totally not there two and half years ago. Elbows came back first (didn’t even know they were even there when they were there). My CIDP has been from the waist down…nothing above my hip area. Two months ago, the PA was checking my knee reflexes and had bent down to check closely for any movement…my leg flew up in the air and almost knocked her in the head.
I really think that attitude is an important component of this screwy disease that no one has ever heard of…just keep the faith and do what the doctor says…
Thank you I get Infusion’s 3 times a week I am impacted hands arms legs and feet. I am not in wheelchair yet and hope not too. I live in rural Oregon in Wallowa so thankful no traffic as I can still drive
We all have to whine at some point, believe me. You are not alone either. Just remember to not let it define who you are. Exercise helps, IVIGs help w/strength, not pain. Muscles do become weak quickly if not used. I am 75 and have CIDP and have had for 6 years. I do my best to be as positive as possible and I have a husband who helps me w/everything including putting my braces on and making sure I don't fall. I feel very fortunate and blessed to have him in my life. Don't feel hopeless, there is always a new tomorrow and what it will bring. I am hoping and praying you get the treatment you so need. A hug for you. The quiltingfool (who has a difficult time holding a needle anymore). LOL
Love you, prayers
Hello My name is Gladys, I am diagnosed with CIDP makes 2.5 years, the first year was a nightmare, then change in attitude and I decided to be positive in everything, also look to God above all things, I try to live well despite already I can not run, jump, use a graduated one of my legs. ok and try to see life differently, live as if today were the last day, live your life intensely positively Try if you can, do not throw to mourn, and esio takes away energy you need. You try to see other doctors who have experience in patients with CIDP, and you will understand, have physical exercises, change your feeding it healthier vegetables, fruits etc, drink water, Hydrate. inform yourself about this disease so you know well what you have. You will want to win and continues forward, it is not easy but if you try really. ok wish you luck and God bless you.
Moaning and "why me" are good for a couple of months, then you need to spring into action. Medication and daily rehab activities will get you going. My problams started in March 2013. 1st IVIG treatments then plasma transfers. Not a fun time. 1st relaspe in May 2013 with more hospital time and plasma transfers. 2nd relaspe in July with a 3rd in August. Finally got to a VA facility with rehab session twice a day along with montoring by 3 doctors. Came home walking in December 2013 My wheelchare, walker, slide boards and mobility scooter are collection dust in the garage. My feet are still numb but they seems to follow my knees and hips. All I need to to is remember to pick them up! Hang in there, there is improvement on the horizion.
Mistylynn, So you have had no treatment and got better on your own initially? If you continue to worsen call the doctor's office and pester them until they get you in. You need to get a clear diagnosis so you can get the appropriate treatment. I also was diagnosed with gbs initially because of fast and severe presentation. I know that when I am relapsing, if I do too much I go backwards. I need all my energy and focus just to try and preserve what I have until the medicine kicks in. I would keep everything moving but take it very easy until you see your doctor. I imagine your memories of the first time are weighing heavy on you. It doesn't have to get that bad. Don't be afraid of asking the doctor for help sooner than your scheduled appointment. There's a really good chance all of this will reverse itself pretty quickly with a good doctor and the right medication.
t sI had physical therapy for a long time thats how I got better from the gbs.. I just started pt again. I got 2 weeks til my specialist appointment
mistylynn81 hang in there. a positive attitude will get you through anything. do keep as active as you can & take care of yourself better than you have ever in your life- eating right; hydrating; get plenty of rest & keep the stress down as best you can. i know- easier said than done, right? once you see your doctor hopefully you get a proper diagnosis and appropriate aggressive treatment. i had symptoms for 6 months until a flare that took away strength and feeling in my arms june 2013. i was diagnosed quickly with CIDP& had 5 days of ivig then 2 weeks in a rehab. then relapsed and my arms, legs, breathing,swallowing, bladder & bowels were involved. 5 days of ivig again helped then 3 months in rehab. i'm doing better bit by bit & am in a wheelchair & now need hip replacement surgery. But i remain hopeful that i will walk again- unassisted & swim & go back to work. venting is healthy but stay positive. if you want to learn more there are several Facebook groups. i have joined 3 & am learning more about my disease & getting support & giving it too. Good luck.
You really need proper treatment and I hope you receive it soon .hang in there and I shall include you in prayers .