Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 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...
Guest guest Posted August 21, 2002 Report Share Posted August 21, 2002 Hello Ed, With treatment with IVIG , my hands back to normaly and i have more strenght in my legs. I think the IBM stopped or run very very slow with the treatment,well the future will confirm this but at the moment i glad because illness is stagnant about 18 months????! Do you went to Occupational Therapy for the feets,legs? In my case i went two times of weck,only passive exercices Pls asked your Doctor for treatment with IVIG , i think its can helpe you. Take care Alvaro Nunes " Ed Reimer " <reim644pa@ho To: OurMyositis tmail.com> cc: Subject: Re: -Ed IBM 21-08-2002 01:24 Please respond to OurMyositis 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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