Connect
CIDP Diagnosis
I was diagnosed with CIDP a little over a year ago. I have symptoms that could or could not be attributed to CIDP, I can't seem to get anyone to take everything as a whole and work on the big picture. I am so frustrated. What are your symptoms, experience with CIDP, treatment(s), team? One doc?
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
ive cidp 12 years , they have to do nerve study and lumbar punture to confirm, i take vygart once weekly for 8 weeks now and this is the best my feet and legs have been in several years. I dont use walker or cane but still have balance issues. work out 3 times a week 69years old.Hope this helps
-
Like -
Helpful -
Hug
1 Reactionwhere are you located
I should’ve been diagnosed with CIDP at least two years previous to my diagnosis. A spinal tap and myelogram pushed me over the diagnostic edge. Consequently, I just had my first intervenous immunoglobulin infusion. It is my understanding that it will take a while, but could be very helpful.
I too have been diagnosed with CIDP and believe that I am on the cusp with that diagnosis. It has been a long frustrating journey. I just started IVIG infusions. I’m hoping they will help. Very frustrating. Need a walker to get around. Can’t seem to get much advice.
@jarrell1
Did you do IVIG infusions first?
@jarrell1
Houston
Beaumont Texas
I was diagnosed in October after two months of testing.
I have no pain, thss as nkful for that. My feet are numb and I believe slowly advancing up towards my knees. Numbness causes balance problems, dizziness and falls. I walk with a cane and am quite mobile. Neurologist and Nurse Practitioner treat me for CIDP and Essential Tremor which runs in my family. I have also been to two different Motion Disorders clinics. I was prescribed am Vyvgart Hytrulo self administered preloaded syringes for the CIDP. #9 injection today. I think it helps but very early in the process. Hopes this helps.
Best wishes.
How do they confirm a diagnosis of CIDP? My rheumatologist mentioned it but nothing further was done. Thanks.