Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Hi Alvaro, I am doing pretty good today. I went to Occupational Therapy today and they gave me some exercises to do for my hands. My left hand won't close completely into a fist so we will be working on strengthing my fingers again. With my IBM I didn't know what was happening, about a year age I started to just fall for no reason and I thought it was just being clumsy. After I told my rheumy about it she asked when I had a muscle biopsy. It had been almost nine years, so she ordered another one and that one showed that I now had IBM. She is checking to see what she can find and I go see her next week. Take care of yourself. Ed >From: Alvaro.Nunes@... >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: -Ed IBM >Date: Tue, 20 Aug 2002 10:02:03 +0100 > > >Hi Ed, > >How are you? >What yours problems? > > > > > > > > > My history: > - Since 1988 (29 anos), I walked by jumps,i thought that was a > way of walk , > I can´t stand up my heets, when i walk, (its like a pendent > foot) ,normaly walk we put first the heets and then the rest of > foot, and i use walkers for a normal walk. But i can stand on > the tips of one´s toes,. > -- March 99 Difficulties in the march " Steppage " ) -- I made RX > lombar, -- > I made Electromiografia (EMG)em Agosto99 Show- > Poliradiculopatia Espondilótica left L3-l4-l5-S1 accented with > significant increase more time latency of wave F . > > --- Then i go to the Doctors Ortopedia and Neurologia and > nothing-no conclusions > Fev2000)---Lombar Ressonancia (without problemas), does not > exist compression in the column and it orders me for > Fisioterapia- (Abril2000), The Doctor said this illness are > badly studied and suggests another Neurologist- > Between April and August I gone for Doctors Neurocirurgia and > Ortopedia , > until in September 2000, I was to the Doctor Neurology (Dr > Proença) and he said i have PM > > -- I was to the Hospital and my exames are like that: > of hand and fist, osteotendinosos parésia 4- in the > dorsiflexão of the feet, consequences, normal hematológicos and > bioquimicos Examinations, excepto CPK 474, Electromiograma with > desnervação sub-agudados musculos proximais with potentials > miopáticos. > Conclusion - Hight CPK ( Normaly less 80) and simetric problem > feet > > I made Genetic tests In January (normaly) > I started fisioterapia(Psicalterapy) 2x per week and continue > until now , i made only passives exercices, - > Jan. 2001 I started to use walkers ,this allowed me to walk so > far in a normal way, > > Byopsie Fev2001 in left lateral Peroneal muscle with IBM > diagnosis, > > Maio2001 - I go to the Hospital for treatment with IVIG > 2Gr/KG, cpk=282 --- After this treatment I verified muscular > improvement, +4(mãos) -3(foots), think that this table of force > goes -to +5 to -5 > > 2º treatment IVIG 1Gr/KG/peso(IVIG) -- 27 Mar2002 - CPK 206 > > > > > > > >I don´t taken any meds, only IVIG, this kind of med help to stopped the >illness and in some case swe win more force in the muscules. >My hands back to the normaly and my foots have a increase of force. >Next year i will for the another treatment with IVIG. >The IVIG don´t cure the illness but it helped to slowly the illness ,this >med is only we have for IBM, i presume > >I hope you can understein this email,my english is not so good. > > > > > > >Take care > > >Alvaro Nunes > > > > " Ed Reimer " > <reim644pa@ho To: >OurMyositis > tmail.com> cc: > Subject: Re: New to the >group-Ed > 20-08-2002 > 00:07 > Please > respond to > OurMyositis > > > > > > >Hi Alvaro, >Thanks for the welcome. I look forward to chatting with everybody they seem > >like s ver nice group of people. I was just dx'd this past May, but have >been treated for PM since 1993. I am taking Prednisone and Methotrexate as >the main meds so far. My rheumy isn't to familiar with IBM so we will see >what transpires. I go see her next week. Look forward to chatting and again > >thanks for the welcome > >Ed > > > >From: Alvaro.Nunes@... > >Reply-To: OurMyositis > >To: OurMyositis > >Subject: Re: New to the group-Ed > >Date: Mon, 19 Aug 2002 14:48:11 +0100 > > > > > >Welcome Ed > > > >My name is Alvaro, 44 years and I have IBM . Since 4 years ago. > >I live in Portugal, my treatment is IVIG only. > > > >You will enjoy the group. They give you info and advice about things you > >might not know about. > > > > > >Take care, > >Alvaro Nunes > > > > > > >_________________________________________________________________ >Join the world's largest e-mail service with MSN Hotmail. >http://www.hotmail.com > > > > > > Quote Link to comment Share on other sites More sharing options...
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