I have a neurological illness that has puzzled doctors.

I was diagnosed seven years ago with primary Dysautonomia by a specialist who tested me in Chicago. I went to Mayo recently and was told by the autonomic specialist that he did not find Dysautonomia. All my symptoms are the same. I am starting at the beginning again and incredibly frustrated plus anxious and depressed that I don’t know what is causing me to not be able to function. Has anyone else had experiences like this?

Me too.
Have had 6-7 neurologists over past 12 yrs with no help from any of them.
Even tried for an appt at Mayo Clinic and was told they’re not accepting any new neurological patients at this time.
Try back in a few months.
They’re not even accepting any patients for primary care at this time.
Good luck getting in.

Started about 10-12 yrs ago with pins and needles in my one foot and then went to the other foot.
My lips upper and lower also were numb,as were both of my cheeks.
Had MS ruled out by brain mri, and over time I was on all meds like Gabapentin,etc.
Other symptoms started over time like problems with my bladder leaking, and not having feeling in my rectum when having a bm.
Had no feeling when I was being catheterized either.
One neurologist referred to it as having a “pelvic anesthesia”.
Had bladder sling done but still had leaking issues.
From there traveled upwards to numbness in my abdomen and legs.
Can’t feel anything because both feet are totally numb, and so are my legs.
My balance is awful and I feel like a weeble.
I use a cane and a walker so I don’t fall.
Besides all of my issues I was diagnosed with CIDP
My nerve pain was daily and in different spots on my feet and legs.
Electrical shocks were worst.
Now my feet hurt so bad, I can’t stand to walk on them at times.
Pins and needles always there, so I use salon pas pain patches, and take ibuprofen and Tramadol daily.
My quality of life sucks because I can’t even go shopping like I used to because I can’t walk around much befor my feet hurt and I get tired.
I’ve had IVIG infusions few years ago with no relief of any of my symptoms, and starting next month I will be having Rituxan infusions with a new neurologist in Phoenix AZ where I’m moving to.
He seems to think this will help me.
I’m hoping it will!

Started about 10-12 yrs ago with pins and needles in my one foot and then went to the other foot.
My lips upper and lower also were numb,as were both of my cheeks.
Had MS ruled out by brain mri, and over time I was on all meds like Gabapentin,etc.
Other symptoms started over time like problems with my bladder leaking, and not having feeling in my rectum when having a bm.
Had no feeling when I was being catheterized either.
One neurologist referred to it as having a “pelvic anesthesia”.
Had bladder sling done but still had leaking issues.
From there traveled upwards to numbness in my abdomen and legs.
Can’t feel anything because both feet are totally numb, and so are my legs.
My balance is awful and I feel like a weeble.
I use a cane and a walker so I don’t fall.
Besides all of my issues I was diagnosed with CIDP
My nerve pain was daily and in different spots on my feet and legs.
Electrical shocks were worst.
Now my feet hurt so bad, I can’t stand to walk on them at times.
Pins and needles always there, so I use salon pas pain patches, and take ibuprofen and Tramadol daily.
My quality of life sucks because I can’t even go shopping like I used to because I can’t walk around much befor my feet hurt and I get tired.
I’ve had IVIG infusions few years ago with no relief of any of my symptoms, and starting next month I will be having Rituxan infusions with a new neurologist in Phoenix AZ where I’m moving to.
He seems to think this will help me.
I’m hoping it will!

Hope it helps you. I may be inline for trying Rituxin also. Doing IVIG infusions monthly now. Unable to say that they are definitely helping or not.

Started about 10-12 yrs ago with pins and needles in my one foot and then went to the other foot.
My lips upper and lower also were numb,as were both of my cheeks.
Had MS ruled out by brain mri, and over time I was on all meds like Gabapentin,etc.
Other symptoms started over time like problems with my bladder leaking, and not having feeling in my rectum when having a bm.
Had no feeling when I was being catheterized either.
One neurologist referred to it as having a “pelvic anesthesia”.
Had bladder sling done but still had leaking issues.
From there traveled upwards to numbness in my abdomen and legs.
Can’t feel anything because both feet are totally numb, and so are my legs.
My balance is awful and I feel like a weeble.
I use a cane and a walker so I don’t fall.
Besides all of my issues I was diagnosed with CIDP
My nerve pain was daily and in different spots on my feet and legs.
Electrical shocks were worst.
Now my feet hurt so bad, I can’t stand to walk on them at times.
Pins and needles always there, so I use salon pas pain patches, and take ibuprofen and Tramadol daily.
My quality of life sucks because I can’t even go shopping like I used to because I can’t walk around much befor my feet hurt and I get tired.
I’ve had IVIG infusions few years ago with no relief of any of my symptoms, and starting next month I will be having Rituxan infusions with a new neurologist in Phoenix AZ where I’m moving to.
He seems to think this will help me.
I’m hoping it will!