Wasn't sure this thread would still be around, but since it is I thought I would share a little saga over the past three years since I fell.
After this fall, my knees kept buckling under me and I continued to fall every few days for several weeks. I went to physical therapy because I thought when I collapsed I hurt my knees. First visit with the physical therapist she said you need a neurologist.
I won't bore you with all the details of the Odyssey of the past three years blood tests for so many different conditions, muscle biopsies, spinal tap, MRIs on my back and my brain the list goes on and on. I was exhausted emotionally and physically and now I know why... this disease is almost impossible to diagnose.
Finally on May 17, 2024 I was diagnosed with a very rare neurological autoimmune disease called CIDP.
For those of you who do not know this is an extremely rare autoimmune disease and my body is attacking the protective fatty sheath around my nerves.
Sure, the one place I need fat I don't have it!
I went from bad to worse, couldn't walk without a walker actually got hospitalized for about a week because my leg stopped working, stopped driving, stopped being able to come and go as I please and losing your independence is one of the worst things that I think could happen to a person, at least it is for me.
Well, I made a fortune selling my car so I guess that was a plus
![Roll Eyes (Sarcastic)](images/smilies/rolleyes.gif)
I just started IVIg treatments and next week will be my third infusion of six. My neurologist said not to expect any noticeable improvements until after the third or fourth treatments however I am happy to report I have a bit less numbness in my hands and my feet and my legs and although the nerve pain is still pretty intense it's not as bad.
My neuro never gave up on me but I have found a neuro at the University of Chicago that has specialized in CIDP both in research and in treatment as her sole focus for years. I will be making an appointment with her soon to make sure I'm getting the best possible treatments.
It took me a while to go from feeling hopeless to hopeful, but now am focused on being very positive and praying to go into remission so I can be an active person again.
Cheers!
Lorene