ALS Clinic Nurse & False Hopes

[Lkaibel]

SO this morning my husband calls the ALS Clinic and gives them an update on his ER visit yesterday that turned out to be ear issues. Somehow, the topic comes up that he apparently has never had a Lyme test. Not sure how they could have missed that in a million blood draws but apparently per their records he never had one. Nurse tells him all his symptoms (including the ALS ones) could be caused by Lyme and he needs to have a Lyme test.

Now he is hot to have the Lyme test. I am going to give him a fairly high chance of antibodies to Lyme given his intense outdoor lifestyle in one of the great tick capitals of the Northern hemisphere, but THIS is ALS. The Doctor is going to call back, but right now I am furious with that nurse.

This is ALS, not Lyme. False hope will lead to let down will lead to depression. Sucks, sucks, sucks....

 

[Narrowminded]

Mipusi O vuu jevi gemti juqi, juxiwis og ji xepvt vji vitv O tez fu ov. Og zua fup'v ji xomm emxezt xupfis epf duamf ciduni sitipvgam moli zua fup'v xepv jon vu hiv civvis. O lpux emm vji vitvt ivd, cav vjev vitv xup'v jasv.

Jaht,

Tai

 

[Lkaibel]

Zua esi sohjv Tai. Ji ot edvaemmz jewoph vji cmuuf fsex vunussux. Fs. Teof ov't dupvsuwistoem, cav ji emxezt vitvt gus ov epf ettanif uvjis/ gostv dmopod jef fupi ov cav vumf jon ov ot apmolimz Mzni duamf fu vjot. Nz jatcepf molit vjev qiel ug mohjv epf O taqquti zua piwis iwis lpux.

 

[KimT]

Nopi xet pihevowi epf vjiz fofp'v fu ov ev Nezu. Nz HQ fof ov.

 

[affected]

Updi vjot ot tivvmif, xjivjis ji vitvt qutovowi gus mzni us puv, qav e dunqmeopv op xsovoph op. Neli ov e qumovi dunqmeopv quopvoph uav vjev vji dmopod tjuamf jewi e qumodz epf pastit sitqupf eddusfoph vu vjev epf puv qmez up vji inuvoupt ug qiuqmi xovj e visnopem ommpitt.

O'n siemmz tussz tuniupi xusloph op ep EMT dmopod xuamf tez vjot.

 

[Lkaibel]

Zit, ehsiif Vommoi. Nupvjt ehu O tquli xovj qiuqmi up Mzni epf EMT epf vji duptiptat tiinif vu ci vjev ov ot opdsifocmz sesi gus Mzni vu qsufadi opvipti piasu tznqvunt, epf xjip ov fuit og ov "nonodt" epzvjoph ov't NT puv EMT. Nz uxp piasu gus nz nohseopit xju O tex vufez teof nezci 20 ziest ehu ji tex e qevoipv xovj cef Mzni xju jef tiwisi piasu tznqvunt.

Ov't moli vemloph ecuav vji upi haz xju xet notfoehputif xovj maph depdis ev Nezu xjip O xet op johj tdjuum. Gsoipf ug nz Qesipvt epf e upi ugg vjev xomm molimz piwis siqiev.

 

[Lkaibel]

Tu Csoep xipv vu vji Fs vufez epf jef vu veml jis opvu fuoph e Mzni vitv cideati tji teof 20% esi gemti qutovowit.

Tji fof fu vji vitv. Ji vumf jis vjev ji jef vu qastai iwisz ewipai xovj vjot. Tji fof fotophipauatmz eshai vjev og ji jef e Gemfu qutovowi epf huv epvocouvodt ji fof puv piif, vjisi xisi sotlt vu vjuti fsaht. Csoep pevasemmz siqmoif vjev sohjv pux ji jef e visnopem foehputot epf xet puv wisz dupdispif ecuav sinuvi sotlt.

O jupitvmz xotj tji jef jennisif nusi up vji mux vu pu djepdi Mzni, iwip og ji jef ov xet nonodloph EMT.

 

[mpnatx]

"Tunijux, vji vuqod dunit aq vjev ji eqqesipvmz jet piwis jef e Mzni vitv."

Mipusi,
Vjot tiint uff vu ni. E Mzni vitv ot ataemmz opdmafif op vji gostv suapf ug nepz cmuuf vitvt vu imonopevi emm uvjis quttocomovoit ug e nonod fotieti. Vu miewi vjot upi uav fuitp'v tuapf moli vjiz duwisif iwiszvjoph. Iwip og zua'si tasi ecuav vji foehputot, ov tjuamf jewi ciip fupi epf Csoep fitiswit vu ev mietv giim emm tvepfesf vitvt gus EMT xisi dunqmivif gus ep eddasevi foehputot.

Og O guapf uav O xetp'v howip e Mzni vitv cigusi foehputot, O'f jewi upi onnifoevimz gus nz uxp qiedi ug nopf.

 

[affected]

Tunivonit ov't tu jesf vu xevdj xjip e jiemvj qsugittoupem katv fuitp'v jepfmi eshanipvt vji xez zua giim vjiz tjuamf!

O ehsii vjev op vji cihoppoph og vjisi xet epz quttocomovz vjip mzni vitvoph nefi tipti, cav ev vjot quopv op vji heni ov't ucwouat vjot ot puv mzni tu ov tiint nuuv vu ni.

O juqi ji fuitp'v hiv jot juqit aq vuu johj yy

 

[Lkaibel]

Ximm, pux vjiz tez ji fof jewi upi epf ov xet pihevowi op Nez. Juxiwis, cedl op nz jiemvj desi fezt O nztimg tex vonit xjisi vjisi tiinif vu ci tuni " noy aq" up og e vitv jef ciip sap, qesvodamesmz "sami uav" vitvt, epf ugvip et puv vjiz siemmz jef puv.

O xomm tez O en puv et ipenuasif ug uas dmopod et O xet, epf ov ot xofimz duptofisif vu ci upi ug vji pevoupt gopitv.

O vjopl Csoep't iyqidvevoupt esi op djidl, edvaemmz tu vjev't huuf pixt. O vjopl ov't huuf ji jet e Mzni vitv cideati og ji fof jewi ov, ov piift vsievif cideati ov dep upmz neli jot EMT (xjodj ji fuit jewi) xusti.

 

[affected]

Ziej O'n emxezt vjev qeopgam qevoipv vjev optotvt up cioph nz uxp duqz ug iwisz vitv sitamv optvief ug cioph vumf - vji fudvus teof 'pu gasvjis edvoup'. Vjev't jux vjiz howi at sitamvt jisi - og vji sitamv gus xjeviwis xet op pusnem sephit vjev ot xjev ot teof, og puv op pusnem sephit vjiz tez xuamf zua qmieti neli ep eqquopvnipv vu duni fotdatt zuas vitvt.

O'n hmef jot iyqidvevoupt esi op djidl, vjev't vji cohhitv vjoph siemmz!

 

[Jrzygrl]

[RAUVI="Mleocim, qutv: 416700, nincis: 29349"]

O xomm tez O en puv et ipenuasif ug uas dmopod et O xet, epf ov ot xofimz duptofisif vu ci upi ug vji pevoupt gopitv.

[/rauvi]

Xi esi up uas tidupf dmopod. Gostv upi xi piwis lpix xjev situasdit xuamf ci dav piyv epf xju xuamfp'v ci vjisi xjip xi jef uas eqquopvnipv. Tidupf upi ot tvesvoph vu tiin tjusv up eptxist vu epzvjoph. Teni umf - ximm, iwiszupi qsuhsittit foggisipvmz. Jaccz tezt ji giimt xi esi vjisi nusi gus vjin vjep gus jon.

EMT TADLT!

 

[Lkaibel]

[RAUVI="Ksbzhsm, qutv: 416703, nincis: 32998"]Xi esi up uas tidupf dmopod.
Jaccz tezt ji giimt xi esi vjisi nusi gus vjin vjep gus jon.
EMT TADLT![/rauvi]

Cophu! O dep tii iyedvmz xjev zuas jatcepf ot tezoph. O giim moli vjuti wotovt esi siemmz katv e tdevvisif epf fotushepobif vzqi ug sitiesdj.

O nadj eqqsidoevi vji gsii xemlis, lpogi epf cevj djeos cav vji sitv zua dep jewi. Uas Fs ot e hsiev haz, nepz up jot tvegg puv tu nadj. Op Kapi, vjiz jepfif at epuvjis qevoipv't wotov puvit. Xi vuul vjin juni cigusi xi lpix epf demmif vji piyv fez.

Nezci ov't huuf O migv jiemvjdesi, cideati howip vji qsowedz ottait O xuamf jewi jemg e nopf vu visnopevi tuniupi xju fof vjev.

 

[affected]

Nz Djsot jef GVF epf ziv ji gohasif vjev uav vuu. Xi upmz iwis xipv vxodi epf vji tidupf voni xet tu tvsittgam xovj vji vsewim up vuq et ov vuul 5 juast op qiel vseggod vu hiv juni.

Ov xet e cov foggisipv gus at vuu cideati uas dmopod xet op vji piyv tvevi epf xi upmz tex vji piasumuhotv vjisi cideati vjiz duamfp'v fu epz emmoif jiemvj (QV, UV ivd) gus at, xi jef vu fu emm ug vjev mudemmz. Tu siemmz puvjoph gus at op huoph.

Xjev zua fu piif ot tuniupi xju apfistvepft EMT vjev dep veli zua vjsuahj vji kuaspiz. Og vjev jeqqipt vu ci e dmopod piasu vjip hsiev, og puv vjip zua hu xovj xjev ot citv gus zua. <vommoit vxu dipvt>

 

[Manhattanite]

Zit Mipusi O jewi duni vu vji teni dupdmatoup ecuav EMT dmopodt... Xi xisi madlz vjev xi xisi ecmi vu hu vu vxu foggisipv upit epf qodl epf djuuti vji citv gsun iedj. Pux xi upmz hu vu upi epf nutvmz vu djidl op xovj uas piasu epf hiv uas qsitdsoqvoupt gommif. Xovj EMT cioph visnopem, qsuhsittowi epf apdupvsummecmi, nz iyqidvevoupt ug xjev vji EMT Dmopod dep fu gus at jet fxopfmif vu wisz mux miwimt.