Re: Hi, I'm New to the Group, diane

[Guest guest]

Hello Diane in Tx

hi my name is and i am in pa. I was dx with NS in 2001 but i was ill since 95.

i have envolvement in .. Brain, cns, lung, liver, spleen, r-adrenal gland, i also have Restless leg, RSD in my right arm and wrist. I have permnent short term memory loss. i go to cognitive therphy for 3 hrs at a time. and i have 2nd Central nervious system vasculittits.

I have been on Plaquineil & Immuran for over 3 yrs now. Along with duragestic patch 50, ES -vicoden. Demoral pills. I must take Tenorman once a day to keep my heart rate reg. if not it will go as high at 178pbm, with the meds it stays right aound 65. My blood work i don't even want to think about because it baffels the dr's .. my a1c for the last 9 months have been 5.5 normal but fasting its rarely under 200-299, UNTIL after i eat than it goes down to normal. My Blood Calcium is high my ace level is high,

I also was told i had Lymphoma.. but my spinal taps were looked at a second opinion and they said no.Right now i am have eye sight loss in my right eye, the Dr thinks is due to the one lession in the brian i have.. i was told by the neuro surgeon that if it grew it would effect my eyesight. because the Eye Dr said my eyes looks good.

well i will stop it there .. i can't remember everything. anyway..

i hope this helps..

Blessings and lots of hugs and a pain free day

in pa

[Guest guest]

Hello Diane in Tx

hi my name is and i am in pa. I was dx with NS in 2001 but i was ill since 95.

i have envolvement in .. Brain, cns, lung, liver, spleen, r-adrenal gland, i also have Restless leg, RSD in my right arm and wrist. I have permnent short term memory loss. i go to cognitive therphy for 3 hrs at a time. and i have 2nd Central nervious system vasculittits.

I have been on Plaquineil & Immuran for over 3 yrs now. Along with duragestic patch 50, ES -vicoden. Demoral pills. I must take Tenorman once a day to keep my heart rate reg. if not it will go as high at 178pbm, with the meds it stays right aound 65. My blood work i don't even want to think about because it baffels the dr's .. my a1c for the last 9 months have been 5.5 normal but fasting its rarely under 200-299, UNTIL after i eat than it goes down to normal. My Blood Calcium is high my ace level is high,

I also was told i had Lymphoma.. but my spinal taps were looked at a second opinion and they said no.Right now i am have eye sight loss in my right eye, the Dr thinks is due to the one lession in the brian i have.. i was told by the neuro surgeon that if it grew it would effect my eyesight. because the Eye Dr said my eyes looks good.

well i will stop it there .. i can't remember everything. anyway..

i hope this helps..

Blessings and lots of hugs and a pain free day

in pa

[Guest guest]

,

Thanks for your reply. You've brought to my mind that I too have short term memory loss (forgot it!) since my 5/00 episode. My Ace level is continuously very high. So far they are baffled that my calcium level is o.k. since my bones are so involved. I'm not complaining! ha-ha. I would love some relief from the pain other than Lortab, but I don't think I can handle anything since in the fall I will be back to doing daycare again (anyway possible). Thanks for letting me know I'm not alone . Sorry for you though.

Blessings and hugs to you also!

Diane in TX

Re: Hi, I'm New to the Group, diane

Hello Diane in Tx

hi my name is and i am in pa. I was dx with NS in 2001 but i was ill since 95.

i have envolvement in .. Brain, cns, lung, liver, spleen, r-adrenal gland, i also have Restless leg, RSD in my right arm and wrist. I have permnent short term memory loss. i go to cognitive therphy for 3 hrs at a time. and i have 2nd Central nervious system vasculittits.

I have been on Plaquineil & Immuran for over 3 yrs now. Along with duragestic patch 50, ES -vicoden. Demoral pills. I must take Tenorman once a day to keep my heart rate reg. if not it will go as high at 178pbm, with the meds it stays right aound 65. My blood work i don't even want to think about because it baffels the dr's .. my a1c for the last 9 months have been 5.5 normal but fasting its rarely under 200-299, UNTIL after i eat than it goes down to normal. My Blood Calcium is high my ace level is high,

I also was told i had Lymphoma.. but my spinal taps were looked at a second opinion and they said no.Right now i am have eye sight loss in my right eye, the Dr thinks is due to the one lession in the brian i have.. i was told by the neuro surgeon that if it grew it would effect my eyesight. because the Eye Dr said my eyes looks good.

well i will stop it there .. i can't remember everything. anyway..

i hope this helps..

Blessings and lots of hugs and a pain free day

in pa