Not so lucky in limbo land
Hello all,
I've been struggling with serious symptoms since December 2014. I woke up one day with no feeling in both legs, I lost balance when I would try to walk, I had facial pain on one side of my face, and my left foot kept trying to turn in. I had a serious case of vertigo as well.
After a few days of this, I went to the doctor (I am not a doctor type person). He checked my reflexes and did some other minor testing and referred me to my first neurologist. I had my first brain MRI which showed two lesions. I had a whole spine MRI and a cervical spine MRI but both of those were done horribly (or so I heard from the doctors who looked at it).
I was told by neuro #1 that I had a demylinating disease, but to wait it out by for a few months and come back again. However, because I still couldn't feel my legs, was terribly tired all the time and could hardly function, I went to see neuro #2.
Neuro #2 said I had atypical MS, something he wasn't used to dealing with, and so her referred me to Neuro #3, who swore I had a some type of venereal disease or was an IV drug user. I don't have other of those issues.
In the meantime, neuro #3 told me to get another brain MRI (done) and he would call me once he got to see it. He never did.
In between all of these doctor visits, I've had more than 30 tubes of blood taken out of my body (all negative for various diseases) , I have lost a lot of weight, my legs are still in shambles and my arms are so very weak. It's so difficult to walk up steps or on any incline of pavement. My legs shake and I lose balance rather easily. I've also been losing my hair so I went to see a dermatologist who diagnosed me with psoriasis on my elbows and knees and on my scalp.
I went to see Neuro #4 after waiting 10 months to get an appointment. He is a great doctor and specializes in MS. He scheduled another brain MRI on a t3 machine (which they didn't do) along with a spinal tap (which I hated). According to him, my lesions aren't in the "right place as MS" and I'm not exactly sure what that means.
The MRI showed the same lesions I've had before (two in the basal ganglia) and my spinal tap showed zero O bands and my legs and arms are still failing miserably.
Now I'm at a loss.
I'm hoping to talk with him today and wanted to know if there were any specific questions I could ask which would help with a diagnosis of MS. Trust me, I don't want MS, but I have every symptom imaginable which points in no other direction BUT MS besides failing eye sight. I guess I'm lucky in that regard.
However, my body is falling apart, I've had to quit work because I just couldn't do it anymore and I'm getting desperate to find out the answer why.
So if anybody reading this could help with questions I could ask neuro #4, I would so greatly appreciate the help.
I've been struggling with serious symptoms since December 2014. I woke up one day with no feeling in both legs, I lost balance when I would try to walk, I had facial pain on one side of my face, and my left foot kept trying to turn in. I had a serious case of vertigo as well.
After a few days of this, I went to the doctor (I am not a doctor type person). He checked my reflexes and did some other minor testing and referred me to my first neurologist. I had my first brain MRI which showed two lesions. I had a whole spine MRI and a cervical spine MRI but both of those were done horribly (or so I heard from the doctors who looked at it).
I was told by neuro #1 that I had a demylinating disease, but to wait it out by for a few months and come back again. However, because I still couldn't feel my legs, was terribly tired all the time and could hardly function, I went to see neuro #2.
Neuro #2 said I had atypical MS, something he wasn't used to dealing with, and so her referred me to Neuro #3, who swore I had a some type of venereal disease or was an IV drug user. I don't have other of those issues.
In the meantime, neuro #3 told me to get another brain MRI (done) and he would call me once he got to see it. He never did.
In between all of these doctor visits, I've had more than 30 tubes of blood taken out of my body (all negative for various diseases) , I have lost a lot of weight, my legs are still in shambles and my arms are so very weak. It's so difficult to walk up steps or on any incline of pavement. My legs shake and I lose balance rather easily. I've also been losing my hair so I went to see a dermatologist who diagnosed me with psoriasis on my elbows and knees and on my scalp.
I went to see Neuro #4 after waiting 10 months to get an appointment. He is a great doctor and specializes in MS. He scheduled another brain MRI on a t3 machine (which they didn't do) along with a spinal tap (which I hated). According to him, my lesions aren't in the "right place as MS" and I'm not exactly sure what that means.
The MRI showed the same lesions I've had before (two in the basal ganglia) and my spinal tap showed zero O bands and my legs and arms are still failing miserably.
Now I'm at a loss.
I'm hoping to talk with him today and wanted to know if there were any specific questions I could ask which would help with a diagnosis of MS. Trust me, I don't want MS, but I have every symptom imaginable which points in no other direction BUT MS besides failing eye sight. I guess I'm lucky in that regard.
However, my body is falling apart, I've had to quit work because I just couldn't do it anymore and I'm getting desperate to find out the answer why.
So if anybody reading this could help with questions I could ask neuro #4, I would so greatly appreciate the help.