Searching For Diagnosis. CIDP? Please Help Me

Posted by 10987654321 @10987654321, Aug 9, 2020

I’m 27. I’ve had to quit working. I can barely function

Started April after deviated septum surgery. A few weeks later I had my blood drawn in hospital after not feeling well. My right arm (where drawn) went tingly and within 12 hours it spread throughout my whole body. My whole body has felt tingly (now numb) since.
Symptoms:
Numbness/(started as tingling)/Weakness of Limbs and hands and feet
Cold limbs that feel extremely weak/hollow they get more cold after blood tests and my hands are starting to cramp and be stiff
Extremely dry eyes (blink weird)
Pain in spine that wraps around chest/shortness of breath
Digestive problems
Severe head confusion/concentration problems
Extreme fatigue
Dizziness
Quit sweating

Please please please share this with anyone around the globe and help me. I was supposed to get married next month. Now I can’t even walk to the mailbox without feeling sick. 🙁

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seachel | @seachel | Dec 19, 2022

So sorry to hear what you are going through… I hate to even suggest this, but I had similar issues after the Covid Vaccine. A doctor suggest it might be Functional Neurological Disorder (FND) because of those symptoms. I say I hate to suggest this because FND is often associated with anxiety and many drs will just assume it is in your head! It is not - there seems to be some sort of trigger. In my case, more and more evidence is coming out that these FND-like symptoms do happen after the vaccine and neurological issues, like neuropathy, can be diagnosed with testing. After 19months of symptoms and pushing for answers, I was recently diagnosed with sensory neuropathy using nerve conductivity testing. More studies are coming out to say that it is probably an immune response to the vaccine, as it is treatable with intravenous globulins or steroids. Anyway, I hope you get a diagnosis and some help! And that you get down that aisle as planned.

Catcando | @catharbert | Aug 21, 2023

The symptoms described in this post sound very much the same as what I have. I was told a little over a year ago that I have CIDP. After months without a firm diagnosis I was finally put on IVIG every 2 weeks. After several months my EMG tests showed a one improvement even though symptoms continued to worsen. Moved to MD where I sought doctor who is interested in CIDP but she questioned diagnosis because of no improvement in symptoms. Now I worry I will lose progress I have made. I am at Johns Hopkins where I expected more help. Second or third opinion?