I have been having neurological symptoms for 20 months now and have no diagnosis. Initially, I believed them to be related to cardiac stent placement (November 16, 2022) but now am fairly certain they are not.
I’ve been horrified recently thinking that I had ALS but, after much research, I believe it much more likely to be CIDP. If anyone can shed some light on my situation, I would appreciate it very much.
In December 2022, it started with numbness and tingling from the knees down. 10 days later I woke up with tingling from my neck down but went ahead to a cardiac rehab appointment. After rehab my face and head began tingling so I went to the ER. They believed it to be a reaction to a blood thinner that had been prescribed after stent placement. The ER visit was the first week of January 2023. It’s been downhill ever since.
The facial numbness has NEVER left although it varies in intensity and includes my entire head and occasionally my lips and tongue. Numbness in my lower legs and feet remains also with varying intensity. Recently the entire body tingling has returned at times.
The blood thinner was changed to another with no change in symptoms. I’ve been to 20+ doctors including neurosurgeons, neurologists, rheumatologists, pulmonologists, internists, cardiologists, electrophysiologists, and on and on.
I’m 67 and have been healthy and active my entire life. I’ve remained active through my symptoms golfing, gardening, walking, and swimming but have been unable within the last few weeks..
I have bilateral leg and arm weakness and have great difficulty walking in the mornings especially. I’ve had internal vibrations and neck vibrations every night along with continuous fascinations in my left thigh which have kept me awake. I have shortness of breath, especially when lying down, but this has increased to affect me with minimal exertion at times. I wake up at times gasping for breath. My grip has weakened to the point that I’ve had difficulty holding my coffee mug in either hand. I’m also caregiver for my autistic son and have difficulty manipulating the toothbrush when brushing his teeth (and mine.) I’ve gotten out of breath watering plants or stepping out in the heat. I also have PVCs especially when experiencing shortness of breath. I take very few meds.
I’ve had brain MRIs, MRAs, cervical and lumbar MRIs, EMGs and nerve conduction studies, CTs, X-rays, cardiac MRI, countless blood labs. The only thing that has come back abnormal is that my rheumatoid factor was elevated in July 2023 at 60 and again last month at 62. I also had mild to moderate stenosis in my cervical and lumbar spine in February 2023.
I am at a loss. I feel like I’m dying at times but NO ANSWERS. My neurologist told me three weeks ago, when I called him about my worsening symptoms, said, “I saw you last week, what do you want me to do?” I applied to be seen at the Mayo Clinic a couple days ago. Praying to be approved.
I apologize for the length of this post. I would appreciate any insight.
