CIDP diagnosis after severe GBS long ago, where do I start?

I am not familiar with this condition. I did locate a link for a leading neurological center in NC that was conducting a study several years ago for diagnosis and treatment of CIDP.. I’m sending it to you in private message, I see a different neurologist at this institution. I’m not sure where you are located. I wish you all the best.

Hello @toolman53, I would like to add my welcome to Connect along with @celia16 and others. It's not an easy task when you are trying to find answers and help for conditions like CIDP. It's good to see that you are actively doing research and learning as much as you can about the condition. I'm not sure if you have seen the Shining Through CIDP site but if not it has a lot of great information that might be helpful to learn more about CIDP and available treatments - https://shiningthroughcidp.com/.

You might find it helpful to scan through other CIDP discussions on Connect to learn what others have shared. Here's a link that lists the different discussions - https://connect.mayoclinic.org/search/discussions/?search=CIDP.

It sounds like you have already contacted the University of Chicago. Do you have any upcoming appointments setup?

Hi there @celia16, your information is helpful as Dr. Gable is exactly the person I'm looking for. I'm in the NW Indiana area so Chicago is 75 hard miles away. I expect the neurologists I need to see are there at the University of Chicago Medical and Biological Sciences section. It's probable that the Mayo Clinic has people with experience concerning peripheral neuropathy conditions as well but it's 425 miles away and expensive to go there. Determining who best to see is my problem as most doctors want to blame aging for my symptoms. It's really a shame to do that.
Thank you so much for your help.

Hello @johnbishop, I hadn't heard of Shining Through CIDP but went there and was pleasantly surprised to find such a helpful website. The first person stories are very good for me to hear as they give me hope. There are also resources for places and people that can diagnose and treat me. This is what I'm looking for as rare diseases/disorders have fewer dollars to gain so are generally overlooked by the medical establishment.
The CICP discussions on Connect to learn will also be helpful as there are a lot of varied experiences, opinions and information concerning CIDP listed. I only became aware of Mayo Clinic Connect yesterday and am impressed with this resource and people like you and @celia16 that really try to assist others with life altering problems.
Could you help me understand how to hyperlink relevant people and websites?
I'm going to recontact GBS/CIDP Foundation for the specific neurologists to see at UCM as I found and lost them. I was going to set up an appt. yesterday with one of them.
Thank you do much for your help @johnbishop.

Hi @toolman53, If you want to make sure a specific member on Connect sees your comment, you just need to use their member name like I did here to respond to your message. For websites you just have to copy and paste the page address (URL) and it will link to the website. New members are prevented from sharing links for a short period of time after joining Connect to keep Connect free of spammers. More how to types of information on using Connect is available in the Help Center here - https://connect.mayoclinic.org/help-center/.

Best wishes on your learning journey. I hope you can keep us updated. Feel free to tag me if you have any questions you think I may be able to answer.

Welcome Toolman 53! I too have had a combination of GBS and CIDP although my timeline is a bit different. I had chronic progressive muscle weakness primarily in my legs for several years and was told for a decade by my rheumatologist that I had fibromyalgia. Then I found out I had neuromuscular toxicity From a drug I took for 25 years for lupus and rheumatoid arthritis. In spite of stopping the drug my symptoms worsen and then I had a Covid infection. Two weeks later had a severe episode of GBS and couldn’t walk at all. I recovered somewhat after five days of IVIG in the hospital and now I feel the CIDP is ongoing and progressive. I live in the Scottsdale area and have a good neuromuscular specialist here. Your plan for the university of Chicago sounds great to me as it is a long but doable commute. Once you’re established there and treatment plan formulated, you should be able to continue your treatments Closer to home. I would take advantage of virtual appointments whenever possible. I do that because of the mobility and transportation difficulty. I can walk with a walker short distances, but need a wheelchair for longer distances and scooter for Grocery shopping, etc. I admire your fortitude and ambition to keep life as normal, productive, and pleasant as possible. I am currently on IVIG and recently started Rituxan infusions. The jury is still out on that as I got my first two infusions three months ago and it takes three months to start kicking in. I am wondering if you take any antidepressant that works specifically for PTSD. I know many people are resistant to that idea, but I have found it’s extremely helpful to Normalize your neurotransmitter balance in the brain to help you cope with the physical disabilities and mood disorder that comes with that. I do hope you are successful with finding an excellent physician where you are and you make significant progress with whatever treatment they recommend. I’m extremely fortunate to have a supportive, helpful spouse and I hope if you’re in a relationship, you have the same support or support from family and friends. You will find people on Mayo Connect kind and helpful as well. Welcome!

@slkanowitz ,
What an encouraging letter! Made ME feel better and I'm not even part of this thread. I agree with what you said, to my limited ability to really understand, not having had GBS, Lupus, or Covid. Have enough else, though, including CIDP, and it's true that the people on Connect are kind and helpful. The moderators are without equal ~~ really fantastic! It's a website you can trust. ~ Barb

Hi there @silkanowtz! I'm sorry to hear of your ongoing neuromuscular problems. I've met many GBS victims over the years and have found the youngest ones recover the most function regardless of how bad the acute phase was. It's something I've always wondered about. Almost universally people seem to be more patient and positive about life's difficulties after all is said and done, though.
I have fibromyalgia mainly in my left ankle and sometimes in the right with a strong needle pain that won't allow me to sleep. Pregabalin controls it very well. I've tried several antidepressants and they don't help me at all. I have a lesser grade of ADHD so am always thinking. Medication for that made my life worse so I stopped taking them and outside of insomnia and some nervousness I cope pretty well. You've had an array of disorders that have culminated in poor ambulation. I've been losing my ambulation battle for most of the past decade and had blamed aging but I work out very hard and overall I'm quite strong and healthy. Two weeks ago I started thinking about how my walking, crashing and falling problems weren't improving at all so started looking into the chronic form of GBS which is CIDP and found that the symptoms fit which really scared me as I continued researching this rare variant of a rare disease.
I'm glad you found a good neuromuscular doctor, they seem to be pretty rare. I made an appt. with one recommended by the GBS/CIDP Foundation. Of the other two at the U. of Chicago Peripheral Neuropathy department one is on permanent leave and expected to retire while the other decided to only deal with ALS patients. I'll have to wait until Jan. for the third but that will give me plenty of time to research CIDP more thoroughly and make lists of questions and my symptoms for the doctor. It always works better that way. The doctor must have a clear understanding of your situation to best treat you. As a customer of the western style
medicine industry you must also advocate for yourself and know in advance if the doctor has the wrong tests, treatment, medication dosage and frequency, etc. in mind for you. One must never be afraid to speak up or walk out and find another doctor if you feel they aren't going to be able or interested enough to help you.
I hope the IVIg helps you plus the Rituxan. I'm glad you have a supportive spouse to be there for you. Outside of my kids I don't have that but am extremely motivated to keep walking and out of an institution which I will refuse to do.
Thank you so much for your kind comments, advice and sharing of experiences.

Hi Barb @bjk3,
Thank you for your comments, you're a sweet kid! I'm sorry to hear you have CIDP and hope the available treatments give you back some of your lost functions or at least stop/slow down the symptoms. For me it's a hopeful situation. Life is hard enough without something like this on top of aging to slow us down. Your help is much appreciated.