Krooninen väsymysoireyhtymä

Keskustelua kroonisesta väsymysoireyhtymästä ja siihen liittyvistä aiheista
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 Post subject: CFS ja (PP)MS?
PostPosted: Tue Jul 29, 2014 09:51 
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Joined: Tue Jul 29, 2014 07:47
Posts: 7
Olen oireillut alkuvuoden hengitystieinfektion jälkeen nyt 5 kk. Oirekokonaisuus pamahti päälle kertaheitolla pari viikkoa infektion/kuumeen laskemisen jälkeen. Oireita todella suuri joukko, tulivat parin viikon sisällä kaikki, suurin osa muutamassa vuorokaudessa (päänsärky, uupumus, raajojen puuduttelu, lihasheikkous ja jäykkyys, jatkuvat lihasnykinät ja -krampit, huimaus, pahoinvointi, tinnitus, ummetus, ääniyliherkkyys, heikentynyt lämmönsieto, sormien puutumisherkkyys ja nykiminen, epätodellinen, jatkuva paha olo, keskittymis- ja aloitekyvyn romahtaminen, neuropaattiset kivut, onneton fyysinen ja henkinen jaksaminen, pahat unihäiriöt, tunne kokonaisvaltaisesta "tyhmistymisestä", punainen/karstainen ihottuma kulmakarvoissa, nenänpielissä ja päässä, kynsien ja kämmenten ihon oheneminen) jne. jne.

Minua on tutkittu laajasti sekä neurologian, sisätautien että myös infektiopolin puolella. Mitään konkreettista selittävää ei ole löytynyt.

Itse olen pelännyt lähinnä PPMS:ää (primääris- progressiivinen ms-tauti). Siihen sopisi osaltaan tuo infektion jälkeisyys, suuri osa oireista sekä ikäni (37 v). Keskushermoston magneettikuvat ovat olleet puhtaat, samoin likvor. Kaularanka kuvataan uudelleen elokuussa (ajoittain rasituksen jälkeen leuan kääntäminen rintaan sähköttää toiseen nivuseen/etureiteen), samoin likvor uusitaan. Pää on kuvattu jo kolme kertaa, viimeisimmän kerran 3 Teslan laitteella ilman varjoainetta. PPMS on vähemmän tulehduksellinen kuin aaltomainen ms, eli mri ja periaatteessa likvorkin voisivat olla ainakin alkuvaiheessa puhtaita. Oireiden ilmaantuminen noin suurella joukolla ja noin nopeasti istuvat huonommin PPMS:ään. Kuumeilua minulla ei ole ollut, sairastumisen alkuvaiheessa pikemminkin alilämpöä. Samoin oli ortostaattista hypotensiota ja sydämentykytyksiä, mutta ne ovat nyt väistyneet.

Olen käytännössä toimintakyvytön ja ollut koko ajan sairaslomalla. Olo on kokonaisvaltaisen surkea koko ajan. Tuntuu, että vanhenin 50 vuotta muutamassa vuorokaudessa. Ajatuksia?


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 Post subject: Re: CFS ja (PP)MS?
PostPosted: Wed Jul 30, 2014 04:26 
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Joined: Wed Dec 18, 2013 09:53
Posts: 140
Itselläni on siis diagnoosit molemmista eli CFS:stä ja MS:stä. MS on aaltoilevaa muotoa, vaikkakaan pahenemisvaiheita ei ole ollut yli kymmeneen vuoteen. Kun pari vuotta sitten aloin oireilla pahemmin, minulle tarjottiin primaaristi etenevän MS-taudin kuvaa. (Edellisen lauseen asiavirheen korjaan myöhemmässä viestissäni.) Muusta syystä otetut pään kuvat eivät diagnoosia vahvistaneet, joten sain jatkaa vanhan MS-diagnoosin kanssa - onneksi. En siis joutunut altistumaan MS-taudin nykylääkkeille.

Yksityiseltä lääkäriltä sain CFS-diagnoosin ja sen mukaisen toimivan hoidon - LDN:än, joka minulla auttaa molempiin tauteihin.

Valitettavasti varsinaiseen asiaasi en enempää pysty kantaa ottamaan, paitsi että valitettavan tutulta oirelistasi kuulostaa. :( Iho-oireet poislukien kuvauksesi on lähes identtinen oman keväällä 2013 laatimani listan kanssa. Näitä oireitahan on monissa sairauksissa, joten en tosiaakaan tarkoita, että "sullakin on varmaan sekä MS että CFS".

ps. Osaan oireistani auttoi osittain pieni annos tyroksiinia.


Last edited by Kide on Wed Jul 30, 2014 08:47, edited 1 time in total.

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 Post subject: Re: CFS ja (PP)MS?
PostPosted: Wed Jul 30, 2014 05:27 
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Joined: Tue Jul 29, 2014 07:47
Posts: 7
Kiitos Kide vastauksesta.

Sait siis tuon ms-diagnoosin jo paljon aiemmin? PPMS:ään ei sinänsä ole mitään taudinkulkuun vaikuttavaa lääkitystä edelleenkään. SPMS:ään eli sekundääris-progressiiviseen jotain taitaa olla.

Magneetissa ja todennäköisesti myös likvorissa oli sinulla siis muutoksia ms-diagnoosin saadessasi?

Mihin oireisiin LDN on sinulla eniten auttanut?


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 Post subject: Re: CFS ja (PP)MS?
PostPosted: Wed Jul 30, 2014 08:29 
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Joined: Wed Dec 18, 2013 09:53
Posts: 140
Sain MS-tautidiagnoosin vuonna 2001 samana päivänä kun WTC:n tornit tuhottiin.

Päässä näkyi tuolloin "plakkeja" ja IgG-indeksi oli koholla selkäydinnäytteessä. Käsittääkseni näitä voi olla "terveilläkin" ja silti niitä käytetään diagnosoinnissa?

Ekana vuonna oli muistaakseni ainakin kolme selkeää pahenemisvaihetta, sen jälkeen tauti rauhoittui yli 10 vuodeksi. Eläkkeelle "pääsin" suoraan diagnoosin jälkeen eli en enää palannut työelämään. Toki ennen eläkettä oli sairauslomia, määräaikaisia kuntoutustukia ym. Fatiikki oli niin pahaa alkuvuosina, että eläke irtosi. Sitten aloin voida paremmin. :)

CFS-diagnoosin sain vuoden 2013 lopussa ja sitä kautta LDN:än. Oireistani ei osaa kukaan sanoa, mikä on mitäkin. Itselleni on tärkeintä, että LDN on oireisiin auttanut.

Olen ollut MS:n suhteen niin kauan vähäoireinen, että en ole seurannut hoitojen kehittymistä. Ihan heti en kuitenkaan usko, etteikö LDN auttaisi kaikkiin MS:n lajeihin edes jossain määrin.

LDN:än tuomasta avusta aloitin uuden otsikon. :wink:


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 Post subject: Re: CFS ja (PP)MS?
PostPosted: Wed Jul 30, 2014 08:44 
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Joined: Wed Dec 18, 2013 09:53
Posts: 140
Ja sitten korjaan tuota ensimmäistä vastaustani. Kyllä huomaa, etten näiden termien kanssa pitkään aikaan ole sylipainia tarvinnut käydä. :roll:

Siinä vaiheessa, kun aloin jälleen oireilla, niin tietenkin ajateltiin, että relapsoiva-remittoiva MS-tautini olisi muuttunut tasaisesti eteneväksi (sekundäärinen progressio). Mikään muu selitys ei käynyt neurologin pienessä mielessäkään. Ei edes sen jälkeen, kun pääni kuvaus kumosi tämän uuden diagnoosin.

Alusta alkaen etenevä eli primaaristi progressiivinen MS on nimensä mukainen ja sellaiseksi ei alun perin aaltomainen MS voi koskaan muuttua.


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 Post subject: Re: CFS ja (PP)MS?
PostPosted: Sun Aug 03, 2014 10:48 
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Joined: Sat Mar 29, 2014 12:20
Posts: 33
Hei
Haluan kommentoida tilannettasi, vaikken MS-taudin diagnosoinnista tajua yhtään mitään. Näillä palstoilla hyvin harvoin esiintyy ns. Vakavan Cfs/ME:n kokeneita. Sellaisiakin kuitenkin on. Luettelemistasi valtavasta määrästä oireita ehdoton valtaosa on sellaisia, joita 10-vuotias tyttäreni on läpikäynyt sitten tämän vuoden helmikuun alun, kun sairastui rajuun hengitystieinfektioon (mykoplasma). Tytöllä on massiivisen paljon neurologisia, liikuntaan ja liikkeisiin liittyviä oireita, samoin ihottumaa, kognitiiviset vaikeudet laajasti ja uupumus tulivat ja menivät, ortostaattiset ongelmat tulevat ja menevät vieläkin, autonominen järjestelmä on ihan sekaisin, kilpirauhasessa ja lisämunuaisessa on veriarvojen perusteella asiat sekaisin, vatsavaivat kuvotuksineen, kipuineen ovat osa elämää. Tytön oireet on niin laajoja, ettei yhdelläkään vastaanotolla olla voitu käsitellä niistä kuin muutama. Meillä on mietitty josko CFS/MEn lisäksi tyttöä vaivaisi jokin muu autoimmuunityyppinen neurologinen sairaus, mutta toisaalta kun tutustuu Severe ME-taudin kuvaan, voisi tytön oireisto sopia siihenkin. Ehkä viestini sinulle Samson on, että tilasi voisi kenties olla Vaikea ME, mutta toivottavasti testaukset kertovat selvemmin rajun oireilusi taustasta.


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 Post subject: Re: CFS ja (PP)MS?
PostPosted: Fri Sep 05, 2014 10:22 
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Joined: Tue Jun 03, 2014 11:03
Posts: 1562
Hei Kaisa,

Kirjoitin sulle pitkän viestin ja se meni bittiavaruuteen. Ymmärrän hyvin lapsesi tilanteen sillä erotuksella, että olen päätynyt huonoon kuntoon ajan kanssa. Minulla ei ole lisämunuaisongelmia (luulen niin), mutta kilpirauhanen lähettelee viestejä ja on paljon muuta. Epäilläänkö lapsellasi synnynnäistä addisonin tautia. Voisin saada parin ystäväni kautta heidän lääkäreiden yksityisvastaanottotiedot, mikäli tarvitset sen suhteen hyvää lääkäriä. Toinen olisi lastenlääkäri Turussa.

_________________
CFS, EDS, kaular. relatiiv. spin.stenoosi, autonom.h. oireisto, TOS, selkäkipu, neuropatia, palleatyrä, gastrospareesi, hypotyreoosi, uniapnea, adenomyosis, punajäkälä, DHEA- ja kalsiumvajaus, DM, rectumprolapsi, oudot lihakset


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 Post subject: Re: CFS ja (PP)MS?
PostPosted: Mon Sep 10, 2018 10:28 
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 Post subject: Re: CFS ja (PP)MS?
PostPosted: Wed Nov 07, 2018 06:52 
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 Post subject: Re: CFS ja (PP)MS?
PostPosted: Mon Nov 19, 2018 09:43 
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