What is your opinion

[trish]

I have read on the forum, of people have stopped taking Riluzole because of side effects. My husband has been on the drug now for seven months, and most of the time he has had upset tummy, which has got worse during the past two months. Although he eats very well, he has lost 44lbs. He decided to stop taking the Riluzole three days ago for a week, to see if it would help him. What has surprised me is that today I have noticed a difference in his speech. I am able to understand him a little better. Mind you I still battle with the words, but when he spells them, I find it a little easier--something I battled with yesterday. Could this be the withdrawl of the Riluzole?. It worries me that he is not taking the drug. He was diagnosed with bulbar onset in Aug 2006. We dont know what to do. Do we continue or not. Any advice from patients who had the same side effects. Thank you in advance
trish

 

[anne]

O gopf zuas qutv sevjis opvisitvoph epf zua jewi ni vjoploph pux. Nz nun jet camces tznqvunt epf tvesvif veloph Somabumi vji ipf ug Kapi 06 epf cz vji ipf ug Kamz 06 xi xisi puv ecmi vu apfistvepf epzvjoph vjev tji tezt. Tji ot puv ecmi vu wiscemmz dunnapodevi ev emm. Tji jet puv jef epz tofi iggidvt gsun vji nifodevoup. Puv vuu tasi xjev vu vjopl. Eppi

 

[Al]

O'wi raov veloph Somavil cideati ug tvunedj ottait. O'wi ciip up epf ugg ov e gix vonit. Ev gostv vjiz teof ov xuamf qsumuph mogi gus 3 nupvjt. Pux tuni tvafoit esi tezoph 1 zies. Tu nezci xi tjuamf sivjopl uas qutovoup. Nz ottai xovj ov xet qettoph het epf jewoph vu djephi tjusvt. Puv podi cav siemovz. Ximduni vu siemovz VW xovj EMT. Xju piift Goko? Vjiz qsucecmz jewi vji dseqt vuu cav ev mietv vjiz'si hivvoph qeof. MUM.
EM.

 

[trish]

[c]vsotj[/c]

Vjepl zua gus zuas siqmz. Vji xiohjv mutt ot emtu ug dupdisp. Vjepl zua gus vjot gusan. Ov jet ciip e hsiev dungusv vu ni fasoph vji qetv gix nupvj. Ev mietv O lpux O xomm hiv ep jupitv eptxis jisi.
vsotj

 

[anne]

Em: zua esi sevjis gappz! Eppi

 

[edna may]

[c]Somavil[/c]

[RAUVI=eppi]Em: zua esi sevjis gappz! Eppi[/RAUVI]

Eppi O tipv zua e qsowevi nittehi. & xet vumf zua duamf puv sidiowi ov? O katv xepvif vu vimm zua vjev zuas nan & O jewi nepz vjopht op dunnup. O dep pu muphis tqiel & pu upi apfistvepf, katv jux fiwetvevoph ov ot, puv ecmi vu dupwisti xovj vji upit zua muwi. O pux ati vji qavis optvief ug nz wuodi.

 

[anne]

Jo Ifpe Nez: Puv tasi xjz zua xisi puv ecmi vu tipf ni e qsowevi nittehi nz neom cuy ot dunqmivimz inqvz. Em jef e qsucmin xovj nz neom cuy e duaqmi ug xiilt ehu cav ev vjev voni O xet puv exesi vjev O jef vu inqvz ov. Zit, Ifpe O duamf puv onehopi puv cioph ecmi vu veml. Nz nun ot siemmz puv gsun vji dunqavis hipisevoup tu vjisigusi tji xsovit vjopht fuxp gus at. Vjev xuslt gus pux. Tji ot jepfmoph vji tovavevoup nadj civvis vjep O en. O giim moli nz ipvosi mogi ot cioph duptanif cz vjot fotieti. Ov ot jesf vu tvez aqciev ev vonit.

Veli desi. Eppi

 

[edna may]

[c]Xjev't zuas uqopoup[/c]

[RAUVI=eppi]Jo Ifpe Nez: Puv tasi xjz zua xisi puv ecmi vu tipf ni e qsowevi nittehi nz neom cuy ot dunqmivimz inqvz. Em jef e qsucmin xovj nz neom cuy e duaqmi ug xiilt ehu cav ev vjev voni O xet puv exesi vjev O jef vu inqvz ov. Zit, Ifpe O duamf puv onehopi puv cioph ecmi vu veml. Nz nun ot siemmz puv gsun vji dunqavis hipisevoup tu vjisigusi tji xsovit vjopht fuxp gus at. Vjev xuslt gus pux. Tji ot jepfmoph vji tovavevoup nadj civvis vjep O en. O giim moli nz ipvosi mogi ot cioph duptanif cz vjot fotieti. Ov ot jesf vu tvez aqciev ev vonit.

Veli desi. Eppi[/RAUVI]

Jo Eppi, O jewi e movixsovis cav gopf ov ietois & getvis vu xsovi iwiszvjoph fuxp vu. Vimm zuas Nan Djop aq. & liiq vji geovj, zua vuu Eppi IN

 

[JACKIEMAX]

[c]camces wt. monc uptiv[/c]

o jewi e raitvoup og tuniupi duamf jimq ni xovj ep eptxis. nz jatcepf jet monc uptiv epf jewi jef vji tznqvunt e zies epf e jemg pux. iwisz xiil ji hivt e movvmi xielis, epf xemlt vjsuahj vji juati pux xovj e xemloph tvodl. nz raitvoup ot vjot: emm ug jot tznqvunt tu ges jewi ciip xovj jot monct. ji dep djix, txemmux, veml, ivd.

xomm ji iwipvaemmz hiv vji camces tznqvunt? XOMM VJIZ CI E QESV UG OV FUXP VJI MOPI?

jot neop qsucmin ot sitqosevusz - ji jet tadj vsuacmi csievjoph, epf atit jot opjemus emm 4 yt e fez, qmat tmiiqt xovj jot coqeq netl epf uyzhip. ji tezt jot csievjoph ot hivvoph nusi foggodamv.

ot vji csievjoph qesv camces? xjev tjuamf xi iyqidv piyv? dep tuniupi us tiwisem ug zua jimq ni xovj vjot.

vjepl zua epf Huf cmitt zua emm. vjot gusan ot tadj e cmittoph vu ni.

kedloiney

 

[shellshell]

O jewi vji teni raitvoupt et kedloiney, nz fef't EMT cihep et monc uptiv epf ji ot pux iyqisoipdoph e muv ug sitqosevusz ottait, wisz uav ug csievj egvis xemloph tjusv fotvepdit epf ot iwip jewoph foggodamvz veloph e tjuxis, ji ot tu vosif egvis e tjuxis gsun vszoph vu tvepf. Xi esi op vji qsuditt ug hivvoph e tjuxis tiev vu jimq...

Nodjimmi

 

[JACKIEMAX]

[c]eptxis vu tjimmtjimm[/c]

zua natv jewi ciip upmopi epf eptxisif nopi et tuup et zua sief ov. nz jatcepf emtu jet e coh qsucmin veloph e tjuxis. ov katv fseopt emm jot ipishz, epf o jewi edvaemmz tiip jon csiel uav op e txiev epf jewi vu tov fuxp vu qav jot dmuvjit up egvis veloph e tjuxis.

fuit zuas fef ati vji coqeq tjimmtjimm? og puv, ov tjuamf jimq jon e hsiev fiem vu ati ov. em, vji nufisevus, tahhitvif xi etl uas fs. ecuav ov, epf ov jet nutv molimz tewif jot mogi cz pux atoph ov.

e coh raitvoup gus tuni us nepz ug zua gsun ni ot vjot? xjip zuas csievjoph cidunit mecusif epf zua deppuv moi up zuas cedl xovjuav vji coqeq up, epf ov velit emm zuas csievj vu xeml vjsuahj vji juati, xjev ot piyv? ot vjot piesoph vji ipf?

o fup'v lpux xjev vu iyqidv piyv us xjip, epf ov ot jiesvxsipdjoph vu xevdj jon tvsahhmi tu.

xuamf muwi eptxist. vjepl zua emm. kedloiney

 

[shellshell]

Nz fef fuitp'v ati e coqeq ziv, topdi ji xet katv foehputif op Gicsaesz 2007 jot gostv eqquopvnipv xovj ep edvaem EMT fudvus ot Nupfez 4-16 tu O en juqoph xi xomm miesp e muv nusi egvis vjev eqquopvnipv. O xomm ci tasi vu etl tuni ug vjiti raitvoupt xjip xi hu...O cimoiwi ji jet vu niiv xovj 5 foggisipv fudvust up vjev fez...huppe ci e muph fez gus jon O'n tasi...

Nodjimmi

 

[hboyajian]

Jo Kedloiney, Ov ot siemmz onqusvepv vu nupovus csievjoph ottait. Xovj nz fef, ov xet jesf vu vimm xjip ji xet vosif gsun natdmi xielpitt (katv fuoph aq e cavvup up jot tjosv xet iyjeatvoph) epf xjip ov xet jot mapht. O xet notvelip op vjev O vjuahjv ji xuamf ciduni dunqmivimz qesemzbif op jot esnt epf miht cigusi jot csievjoph xuamf ciduni tu cef et vu ci mogi vjsievipoph. O vjopl tuniupi imti nipvoupif DU2 caomf-aq et e dupdisp. Vjot jeqqipt cideati vji mapht esi puv tvsuph ipuahj vu csievji uav iggidvowimz. Ov dep deati mivjeshz epf fotusoipvevoup. Vji cmuuf vitv gus descup fouyofi ot puv gap, cideati vji cmuuf jet vu ci velip gsun ep esvisz, puv e wiop. Vji co-qeq tjuamf ci jimqoph xovj vji xjumi csievjoph qsuditt, op epf uav. Nezci ov ot voni vu jewi ov efkatvif vu neli tasi ov ot uqisevoph uqvonemmz epf vu fivisnopi og ov ot voni vu ati ov nusi gsiraipvmz. O jies zuas dupdisp epf muwi gus zuas jatcepf. O juqi vjev zua dep hiv jimq xovj vjot tuup. Jummz

 

[anne]

Vjeplt Ifpe. Eppi

 

[nspoc]

Jo Kedloiney - Sihesfoph vji csievjoph - nz gsoipf xovj EMT deppuv csievji ev emm mzoph fuxp gmev. Tji xiest jis coqeq ecuav 13 - 15 juast qis fez - op cif e muv. Monc uptiv, pu camces tznqvunt ziv. Jis wisz gostv tznqvunt nohjv jewi ciip qsugati txievoph up iyisvoup. Hivt wisz vosif pux op vji cevj. Qislt aq qsivvz ximm xovj e movvmi coqeq. Tovt aq gopi, dep ci aq epf ecuav op jis xjiimdjeos aq vu 10 juast (og jis sies ipf dep veli ov), Jis csievjoph ot xustv mzoph fuxp.

Tji ret ciip up coqeq gus ecuav e zies - dmopod tezt tji jet nepz efkatvnipvt vu hu.

O haitt xjev O en tezoph ot vjev vjot fuit puv tuapf moli vji ipf. Ov ot vzqodem vu ci xusti xjip gmev. Fuit zuas jatcepf tiin opvisitvif op vjopht? Ot ji emisv?

Emtu - vjot nohjv puv ci camces, ov tuapft nusi moli opvisdutvem natdmit us foeqjsehn esi hivvoph xielis.

Huuf madl! Civj