Hi all, Thanks for this group. I have had severe digestive issues for 10 years since getting food poisoning and developing SIBO (small intestinal bacteria overgrowth). Apparently my B12 was not being absorbed due to the antibody being produced which stops the intrinsic factor using the B12. I often asked for B12, but my levels in my blood test high. Log story short, over the past 2 years no neurologist or doctor have been able to explain my loss of use of legs from waist down, loss of balance, proprioception, severe head and neck pain, hands now getting numb, etc. Finally diagnosed with p..a. and the SCD. Has anyone else had these issues?? Could use a few fellow sufferers.
I have been to 9 neurologist, had 20 MRIs and many hideous tests. On my way to Mayo Clinic in Rochester ,MN. I am from Florida.
Now seeing a hematologist who is just as puzzled as everyone else. Apparently I have a lot of degeneration in my neck as well as holes or lesions or syrinxes in my spinal cord. A surgeon says he can relieve some of the pain with surgery but cannot take away the damage to the spinal cord.
Any comments or suggestions would be welcome. I still love life and the beauty around us. I just don't want the disease to progress any more as the end result is suffocation. Yikes.
Thanks for listening,
Susan in FL