newbie/long storybut just this once let you get to now me

[Guest guest]

2ndayr peog ms 3yr before rrms with 2 week attacks and complete remision 3 yrs

ago poor diet ocverworking 12 hrs 5 a week o my feet poor slp and alwys ongo was

also bulemic same coditons on onset21 yrs this time thougth dr felt coul not

assosite sensor loss with strenght had bad er dr and he convinced my dr of 18 yr

to dc innmuan had been on 13 yrs i went 9 mos without anthing then finally

somone gave me cpaxonme did not work also given nivantrone whic put me in

remission n 5 dasy but car accident and trauma going to see pcp dr stoped

remision felt tha anemia was thtratt but the have trie ivig, cytoxaan low dose

tons of iv solumedrol cellcept plasma excange last mos rebif nothing has

stiopped this attack went to johh hopkins hospital dr tested me smalll nerve

fibers did eye test and bloodwork becaue at last 3 neruos beieve i have another

unknown illnes in cns afecting me giing me 2 weeks for the result i have sever

senosry loss from feet to head was effecting mostly lower torso to feet now

numness and wekness above waist into ribs and stomach muscles spine neck but

most scary arms hands neck and face losing stenght wich never a problem before

and wea ness when he tested my legs te couldd not get a reflex and uncommon for

ms becusr eve if sever reflexes ususaull hyber he believes the sensor loss can

be attributed to somthing else but if idiopathic will be diificult to treat if

it can aall

my drug choices, per neuro will be novantrone, tysabri and new finglomodi would

like to know if anyone ot there with experience

for 2ndary what have u taken how long was your longest atack and what worked

did you get functioning backhave become anemic from all the meds they have tried

last 3 rs and i knwo nerve damge irreversible

please gett this vibraton everytime i move and it starts to make the numbnes

accelerate on Ampra which workds for me and rebif which desn't considering ldn

and diet and bee stings'not fr forbidding me to smoke or take anyymore take iv

sterods anymore as he a beginning to efect eyes and dental

the difernce between this attack ad last 18 yrs us that i smoke and progresed

the disease canot cry ovre what in asst but must try to go save what i have and

maybe slow it down

thanks for your patience

deborah copeland

[Guest guest]

wow--i did 3doses of novantrone-it was great for me. It gave me alot of mobility. But i lost tons of weight. When i decide to go back on drugs(early nxt yr)its my first choice. Im just starting to have flares,my last novantrone was almost 3yrs ago. My neuro still amazed that my system responded so welll. Other than weight loss(125-84Lbs) i didnt haveany side effects. Hope this helps. HUGS..............

SHALONDA

"Me + God's grace & forgiveness can overcome any & everything"

Subject: newbie/long storybut just this once let you get to now meTo: MSersLife Date: Thursday, November 25, 2010, 11:40 AM

2ndayr peog ms 3yr before rrms with 2 week attacks and complete remision 3 yrs ago poor diet ocverworking 12 hrs 5 a week o my feet poor slp and alwys ongo was also bulemic same coditons on onset21 yrs this time thougth dr felt coul not assosite sensor loss with strenght had bad er dr and he convinced my dr of 18 yr to dc innmuan had been on 13 yrs i went 9 mos without anthing then finally somone gave me cpaxonme did not work also given nivantrone whic put me in remission n 5 dasy but car accident and trauma going to see pcp dr stoped remision felt tha anemia was thtratt but the have trie ivig, cytoxaan low dose tons of iv solumedrol cellcept plasma excange last mos rebif nothing has stiopped this attack went to johh hopkins hospital dr tested me smalll nerve fibers did eye test and bloodwork becaue at last 3 neruos beieve i have another unknown illnes in cns afecting me giing me 2 weeks for the result i have sever senosry loss from feet to head

was effecting mostly lower torso to feet now numness and wekness above waist into ribs and stomach muscles spine neck but most scary arms hands neck and face losing stenght wich never a problem before and wea ness when he tested my legs te couldd not get a reflex and uncommon for ms becusr eve if sever reflexes ususaull hyber he believes the sensor loss can be attributed to somthing else but if idiopathic will be diificult to treat if it can aallmy drug choices, per neuro will be novantrone, tysabri and new finglomodi would like to know if anyone ot there with experience for 2ndary what have u taken how long was your longest atack and what worked did you get functioning backhave become anemic from all the meds they have tried last 3 rs and i knwo nerve damge irreversibleplease gett this vibraton everytime i move and it starts to make the numbnes accelerate on Ampra which workds for me and rebif which desn't considering ldn and diet and bee

stings'not fr forbidding me to smoke or take anyymore take iv sterods anymore as he a beginning to efect eyes and dentalthe difernce between this attack ad last 18 yrs us that i smoke and progresed the disease canot cry ovre what in asst but must try to go save what i have and maybe slow it downthanks for your patiencedeborah copeland

[Guest guest]

Hi DeborahWhat kind of work did you do before you 'retired'? I also overworked myself the last year before I went out on disability. It was nothing for me to put in 15 to 30 hours of overtime. At least I had a sit down job--I can't imagine being on my feet like you were. You have really been through a lot, haven't you? It's good you were able to go to s Hopkins. They are the best for Transverse Myelitis so I would imagine they are good for MS, as well.hugs SharonThis email is a natural hand made product. The slight

variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Thu, November 25, 2010 9:40:46 AMSubject: newbie/long storybut just this once let you get to now me

2ndayr peog ms 3yr before rrms with 2 week attacks and complete remision 3 yrs ago poor diet ocverworking 12 hrs 5 a week o my feet poor slp and alwys ongo was also bulemic same coditons on onset21 yrs this time thougth dr felt coul not assosite sensor loss with strenght had bad er dr and he convinced my dr of 18 yr to dc innmuan had been on 13 yrs i went 9 mos without anthing then finally somone gave me cpaxonme did not work also given nivantrone whic put me in remission n 5 dasy but car accident and trauma going to see pcp dr stoped remision felt tha anemia was thtratt but the have trie ivig, cytoxaan low dose tons of iv solumedrol cellcept plasma excange last mos rebif nothing has stiopped this attack went to johh hopkins hospital dr tested me smalll nerve fibers did eye test and bloodwork becaue at last 3 neruos beieve i have another unknown illnes in cns afecting me giing me 2 weeks for the result i have sever senosry

loss from feet to head was effecting mostly lower torso to feet now numness and wekness above waist into ribs and stomach muscles spine neck but most scary arms hands neck and face losing stenght wich never a problem before and wea ness when he tested my legs te couldd not get a reflex and uncommon for ms becusr eve if sever reflexes ususaull hyber he believes the sensor loss can be attributed to somthing else but if idiopathic will be diificult to treat if it can aallmy drug choices, per neuro will be novantrone, tysabri and new finglomodi would like to know if anyone ot there with experience for 2ndary what have u taken how long was your longest atack and what worked did you get functioning backhave become anemic from all the meds they have tried last 3 rs and i knwo nerve damge irreversibleplease gett this vibraton everytime i move and it starts to make the numbnes accelerate on Ampra which workds for me and rebif which desn't

considering ldn and diet and bee stings'not fr forbidding me to smoke or take anyymore take iv sterods anymore as he a beginning to efect eyes and dentalthe difernce between this attack ad last 18 yrs us that i smoke and progresed the disease canot cry ovre what in asst but must try to go save what i have and maybe slow it downthanks for your patiencedeborah copeland------------------------------------