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CIDP diagnosis after severe GBS long ago, where do I start?
Neuropathy | Last Active: 5 days ago | Replies (9)Comment receiving replies
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!
Replies to "Welcome Toolman 53! I too have had a combination of GBS and CIDP although my timeline..."
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.
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@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