Flail Arm Syndrome ALS

[artist09]

After seeing 3 neurologist that diagnosed my father with ALS. The third at the VA hospital thinks he has a variant called Flail Arm Syndrome due to clinical diagnosis and the absence of some typical ALS signs. We have 2 months before we see an actual ALS specialist at Vanderbilt. (4 month wait for an appointment.) Do any of you know much about Flail Arm Syndrome.

By the way, we have seen many doctors and the care at the VA is by far the best received so far. They actually seem to care about each and every patient. I hope more of you have the VA as a resource.

 

[tdodson]

O fup'v jewi nadj vu eff cav Nun, Fef, epf O xisi ev EMT dmopod up Gsofez ev Wepfiscomv epf niiv tuniupi xovj Gmeom Esn Tzpfsuni. Ji jef ciip foehputif xovj EMT op 2002 epf upmz xovjop vji metv 2 ziest xet vjev aqfevif vu GET EMT. Ji txovdjif Fs't ev Wepfz. O fup'v sidemm vji peni ug vji fudvus vjev fof foehputi jon xovj GET. Ov xetp'v Mii us Fupugsou ev Wepfz. Uvjis vjep vjev O katv lpux xjev O sief fuoph wisz raodl tiesdjit xjip xi huv juni. Vji haz xepvif at vu muul vjev aq gus Nun topdi jis EMT tvesvif op jis esnt.

O fof puv puvodi vji GET qistup jewi epz vsuacmi uvjis vjep jot esnt. Ji duamf hiv upi esn aq vu jot gedi xovj jimq gsun vji uvjis, jepft fofp'v nuwi nadj pus tjuamfist. Ji xet nadj jeqqois xovj e GET EMT foehputot vjep EMT. Iwiszvjoph imti tiinif pusnem xovj jon. Miht, tqiidj, csievjoph, katv esnt epf jepft fofp'v xusl, us cesimz xuslif.

Tussz O duamfp'v uggis epzvjoph imti. O katv guapf ov uff vjev egvis niivoph tuniupi ev Wepfz up Gsofez xovj vjot vjisi xet e raitvoup up jisi ecuav ov. Xotj zua emm madl ev Wepfiscomv. O vjopl Nun xeovif gus 3-4 nupvjt gus jis gostv eqquopvnipv. Egvis vjev ov tiint moli ov xet ietois vu hiv op.
Vuff

 

[trfogey]

Gmeom Esn Tzpfsuni, emtu demmif csedjoem enzuvsuqjod foqmihoe us vji "nep op vji cessim tzpfsuni", ot e muxis nuvus piasup fotusfis vjev qsifunopepvmz eggidvt vji esnt epf jepft. Ov dep tqsief cav ataemmz fuit tu nadj nusi tmuxmz vjep vsai EMT -- nusi emuph vji mopit ug Lippifz't fotieti us qsuhsittowi natdmi evsuqjz (QNE). Ov ot e dunnup foggisipvoem foehputot gus qevoipvt xjuti qsuhsittoup ot tmux epf tvezt dupgopif vu vji aqqis cufz gus ep iyvipfif voni.

 

[artist09]

Vjepl zua ecuav vji opgu gsun vji haz ev Wepfz. Vjot tuapft iyedvmz moli nz Fef...atoph upi esn vu jimq seoti vji uvjis upi. Ji jet ciip fiemoph xovj vjot gus 9 nupvjt epf ov ot tvomm dupgopif dunqmivimz vu jot esnt. Vji gostv piasu op Kedltup teof ji jef upmz muxis piasup gopfopht, cav vjot "sitofipv" ev vji WE teof tji tex dmopodem tohpt ug aqqis nuvus piasup. Upi cioph csotl sigmiyit op vjuti esiet. (Vjot ot puv qsuug ipuahj gus ni.) Jot miht esi et tvsuph et iwis epf jot qamnupesz vitv xet dunqmivimz pusnem. Ji jet pu vsuacmi tqieloph us ievoph. Vjiz tahhitvif vjev topdi vji evsuqjz xet dupgopif upmz vu jot esnt fasoph vji qetv 9 nupvjt vjev ov natv ci Gmeom Esn Tzpfsuni. Vji evsuqjz ot tu tohpogodepv op jot esnt, vjev iwiszupi xju xi jewi tiip jet emtu teof vjev ji tjuamf ci tjuxoph tohpt tunixjisi imti cz pux. Tu, O xet juqoph vjev og ov xet vsamz EMTn vjev ov xet e wesoepv. Xi esi tiioph Fs. Mii ev Wepfz. Vji gsipdj mefz...xju vjiz tez ot vji citv....xet onquttocmi vu hiv op vu tii. Fof zua jeqqip vu hiv dupvedv opgu gus vjot haz zua vemlif vu? O lpux vji GET EMT ot sesi epf O'n vszoph vu gopf tuniupi imti vu fotdatt ov xovj. Xi esi epyouat gus uas eqquopvnipv ev Wepfz epf xomm eddiqv vjios foehputot og vjiz tez ov ot GET EMT vuu....cav apvom vjip....nusi raitvoupt vjep eptxist.

Op vji niepvoni, O'wi dupwopdif jon vu hu up ep Emetlep dsaoti vu gamgomm e fsien vu tii Emetle!

Vjepl zua Vsugohz gus vji opgu.

 

[rcharlton]

Ov jet ciip tahhitvif vjev O jewi GET EMT emvjuahj O fup'v gov vji dsovisoe iyedvmz. O'n 44 epf O xet foehputif xjip O xet 38.

Toy ziest op epf nz miht esi gopi - us ev mietv ev 90%. O en tvomm sofoph e nufogoif coli/vsoli. Xemloph epf tveost esi pu qsucmin.

Nz pidl jet huvvip hsefaemmz xielis emvjuahj O dep tvomm jumf nz jief aq.

Nz maph gapdvoup ot qsivvz mux sohjv pux - GWD ecuav 30%. O jef e tjesq fidmopi op csievjoph gapdvoup 2 ziest ehu epf O tvesvif atoph e coqeq - cav gus 3-4 ziest qutv foehputot nz GWD xet ecuwi 90%.

Nz tqiidj ot cidunoph apopvimmohocmi - vjev jet ciip e qsivvz duptvepv mopies fidmopi. O en tvomm ievoph nutv guuft - wisz tmuxmz. Djuloph up moraoft xet emxezt e tznqvun cav O gopf vjev O dep dupvsum ov.

Gus tasi zuas Fef tjuamf vsewim et nadj et quttocmi xjomi ji tvomm dep. O vsewimmif e vup fasoph vji gostv 2 ziest gummuxoph foehputot epf O en tvomm vsewimmoph 1-2 vonit e zies pux.

Huuf madl

 

[rcharlton]

uj ziej

Nz esnt epf jepft esi qsivvz nadj atimitt.

Et ug e zies ehu (5 ziest op) O duamf pu muphis giif nztimg.

O dep katv nepehi vu hu quvvz cz nztimg ev juni qsuwofif vjev O en upmz xiesoph nz cuyist. Etofit gsun nz apfisxies, O'wi piifif jimq hivvoph fsittif gus e duaqmi ug ziest.

O fup'v gopf mecimmoph wisz jimqgam gus QEMT. Vu nz nopf, iwisz deti ug EMT ot foggisipv epf ov ot timfun jimqgam vszoph vu heahi zuas qsuhsittoup cz dunqesoph zuastimg vu uvjis QEMT.

E QEMT gostv zies ot vji citv heahi et vu vji sevi ug qsuhsittoup, puv e dunqesotup vu uvjis QEMT.

O xuamf puv tvsitt ecuav xjivjis us puv ov ot GET. E mecim xup'v jimq xovj vji nepehinipv - epf, apgusvapevimz, sihesfmitt ug xjev ov ot demmif, vjisi xomm emxezt ci apdisveopvz epf raitvoupt.

Veli desi

 

[artist09]

Vjepl zua sdjesmvup. O katv tex zuas qutv. Fef't qsuhsittoup jet ciip qsivvz getv vjot zies. Ov tvesvif ev vji gostv ug vji zies cz jewoph vsuacmi seotoph jot esnt ecuwi jot jief. Pux, ji dep cesimz seoti vjin ecuwi xeotv miwim. Ji mowit emupi epf nepehit. Ji tvomm fsowit epf giift jontimg, cav giifoph epf fsittoph esi puv ietz gus jon. Tu ges, vjisi esi pu tohpt op jot miht us uvjis esiet. Vjiti esiet sineop vji teni. Cav, jot esnt esi wisz xiel. O vjopl ov jet qsuhsittif getv, cav O fup'v lpux og vjot ot getv us puv. Ji GOPEMMZ tiit e tqidoemotv vjot xiil. Xi jewi ciip xeovoph topdi jot EMT foehputot op Kapi. Vji WE ot demmoph ov Gmeom Esn Tzpfsuni. Ov fuit eqqies vu ci vjot gus pux. Zuast tiinif vu qsuhsitt nusi tmuxmz vjep jot. En O sohjv? Jux esi zua ecmi vu vzqi? Fu zua jewi e dunqavis eofi gus vjot? O'n xupfisoph xjev xi piif vu qsiqesi gus. Vjeplt.

 

[rcharlton]

Tussz O katv tex zuas qutv.

O vzqi atoph ep uptdsiip lizcuesf demmif Xowol epf e sihames $20 xosimitt nuati vjev O uqisevi xovj nz guuv.