tarapags1107
03-06-2008, 02:03 PM
Hello,
I visited my MS specialist today after she sent me for all my tests (repeated MRI on a stronger magnet), neurophthamolgy test, chest CT and x-ray, and some very detailed blood work. Well, she told me that everything was again negative and that there was no explanation for the obands in my CSF from these tests. I told her how I have been feeling some of my symptoms decreasing since I started the Vitamin D and she said that it was an "immunodulator" and expected. She did another neurological exam on me and said my strength has improved since my last visit with her ( I had left sided weakness apparently before ) which is what I was trying to tell her~! I don't feel like my entire left foot is numb anymore, just some residual numbness in one of my toes since starting the vitamin megadosing. She also said that she wanted to repeat the lumbar puncture to see if the obands were still present (which im assuming they will be). I asked her if the obands could have anything to do with the vitamin D deficiency and she said absolutely not .(which rules out my theory! shucks) However, she said that she was going to repeat the spinal tap and if it is positive again then she will start me on treatment for MS. She said although rare, no lesion MS is found in up to 10% of diagnosed cases. I am just hoping that this is what I have and I don't get misdiagnosed again, like I did with lymes disease back in October. She also said that I've had what she considers two episodes within the last 3 years which is conclusive enough for her to diagnose I'm assuming. My regular neuro wanted me to get a skin/nerve biopsy in Boston that he mentioned in my progress notes but did not go through with it yet. I tried calling him today but of course hes on vaca and won't be back until mid march. I just want to make sure they rule out absolutely everything before beginning treatments. The good news is that she said that if it does end up being MS, that the way my presented itself (sensory issues) is generally a good outlook/outcome. I'll wait it out for now I guess.
Tara
I visited my MS specialist today after she sent me for all my tests (repeated MRI on a stronger magnet), neurophthamolgy test, chest CT and x-ray, and some very detailed blood work. Well, she told me that everything was again negative and that there was no explanation for the obands in my CSF from these tests. I told her how I have been feeling some of my symptoms decreasing since I started the Vitamin D and she said that it was an "immunodulator" and expected. She did another neurological exam on me and said my strength has improved since my last visit with her ( I had left sided weakness apparently before ) which is what I was trying to tell her~! I don't feel like my entire left foot is numb anymore, just some residual numbness in one of my toes since starting the vitamin megadosing. She also said that she wanted to repeat the lumbar puncture to see if the obands were still present (which im assuming they will be). I asked her if the obands could have anything to do with the vitamin D deficiency and she said absolutely not .(which rules out my theory! shucks) However, she said that she was going to repeat the spinal tap and if it is positive again then she will start me on treatment for MS. She said although rare, no lesion MS is found in up to 10% of diagnosed cases. I am just hoping that this is what I have and I don't get misdiagnosed again, like I did with lymes disease back in October. She also said that I've had what she considers two episodes within the last 3 years which is conclusive enough for her to diagnose I'm assuming. My regular neuro wanted me to get a skin/nerve biopsy in Boston that he mentioned in my progress notes but did not go through with it yet. I tried calling him today but of course hes on vaca and won't be back until mid march. I just want to make sure they rule out absolutely everything before beginning treatments. The good news is that she said that if it does end up being MS, that the way my presented itself (sensory issues) is generally a good outlook/outcome. I'll wait it out for now I guess.
Tara
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MSNik
03-06-2008, 08:23 PM
Hey Tara, sounds like you have a very thorough and very good doctor handing your case...good for you. I hope you dont have MS, but if you do, you are well prepared and seem to be in good hands.
please keep us posted, and youre right not to rush into drugs...although I am a proponent of them, and feel they have helped me, I surely wouldnt be sticking myself 3 times a week if I didnt know for sure why I was doing it!
Keep us posted.
Nikki
please keep us posted, and youre right not to rush into drugs...although I am a proponent of them, and feel they have helped me, I surely wouldnt be sticking myself 3 times a week if I didnt know for sure why I was doing it!
Keep us posted.
Nikki
tarapags1107
03-07-2008, 08:07 AM
thanks nikki,
I'll definately keep you all posted. I am somewhat relieved that I didn't start taking the vit D along time ago when my rheumotologist found out that it was low (she never prescribed me anything either) because I probably would not have seen the neuro if I did since my symptoms are subsiding. Everything happens for a reason thats for sure. My doc is really good and I've been so fortunate to have been referred to her. I'm just surprized that she doesn't want to just sit and watch me because I thought it was near to impossible to be diagnosed off of a spinal tap alone. She mentioned repeated the blood work (for connective tissue disorders, etc) down the road as well. I probably won't know for sure until next month since my ms specialist is also a teacher so shes not always available for appts and such but I'll keep you posted.
Tara
I'll definately keep you all posted. I am somewhat relieved that I didn't start taking the vit D along time ago when my rheumotologist found out that it was low (she never prescribed me anything either) because I probably would not have seen the neuro if I did since my symptoms are subsiding. Everything happens for a reason thats for sure. My doc is really good and I've been so fortunate to have been referred to her. I'm just surprized that she doesn't want to just sit and watch me because I thought it was near to impossible to be diagnosed off of a spinal tap alone. She mentioned repeated the blood work (for connective tissue disorders, etc) down the road as well. I probably won't know for sure until next month since my ms specialist is also a teacher so shes not always available for appts and such but I'll keep you posted.
Tara