In 2008, I started with episodes of feeling like passing out. Then symptoms went away. Month later had tingling in both hands very sensitive to cold weather. Made it worse. Then went away. Couple Months later had hands and both feet tingling. Symptoms lasted longer this time. They thought I had MS and ran all kinds of tests but no lesions. Symptoms went way. Couple months later had the tingling and now numbness in all extremities. That eventually went way. My doctor not neurologist just brushed it off. So I did too. My next symptoms were tremors and then balance issues, then memory issues, then falling 5,6,7 + times in a week. Then I couldn’t get off the couch or up off the floor. This went on for years. He never referred me to a neurologist. So I finally set it up myself. I told them I needed an appt to rule out MS. Told my Dr and he sent the referral for me. The first neurologist I went to, walked in, never ran any test, didn’t check my reflexes, did nothing! Stood there, said “ you don’t have MS, it’s just neuropathy” and left the room. I’m continuing to get worse. I just let it go as I didn’t know what to do. In October 2017 my sister died of MS and I have a major exacerbation of my symptoms and now have not gone away. My PCP ordered an EMG. Everyone warned me how pain full it is. This Dr starts doing the EMG and instantly stayed “something is wrong” as she tested my hand and nothing happened. Moved to my elbow, same thing nothing. Moved to other arm and legs, Nothing. I had no reflexes. I could not feel any of the testing either.
I went to a second Neurologist was able to get in to the BEST in my town. He immediately checked my spinal fluid which the protein was 317. He did more testing. Said not MS but said I have a dual diagnosis of CMT and CIDP. But this time I started having the breathing issues and being rushed to hospital thinking I was having a stroke. But it wasn’t. Just more rare symptoms of my illness. Got started on my IVIG treatments 2 days every month. At first didn’t notice anything. And I continued to have my breathing episodes. That’s when I went to the Mayo Clinic there at Rochester. And the rest is in previous message.
I am doing much better. Haven’t had a breathing episode in months. My pain is tolerable. I refuse to take narcotics as I know one day I might need them. CBD lotion is very helpful. And since I am now getting my IVIGs every 2 weeks, I am feeling better than I did but only hold me for one week. Then I’m so fatigued, tremors, balance and pain get so bad. I walk with a cane when at work and alone in public. All in All I feel the IVIGs are helping me as I’m still walking. When I was only getting them the every 4 weeks I got to where I could barely walk by end of day and couldn’t get off the couch. I’m not that severe anymore. The fatigue, pain, and balance are what gets bad before my treatments are due. My other symptoms are All still there but not getting worse thank goodness.