diane C.
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From: Kelly on 3 Aug 2008 20:51 http://www.medscape.com/viewarticle/555935 Hi Diane, I have been doing some reading for you and have posted the above article. Your doctor mentioned I believe, that he was considering rituxamab. they are testing it for MS as well now and personally if I had any MS in my family or even thought I did I would be demanding to be pulled from the tnf receptors. That I know is a personal thing but it is also a documented thing (really professional term that thing!). Despite my infusions (they really are getting better - I am cutting side effects right down) they are working and I am doing better. My pain level on my neuro stuff is sometimes down a level too so that helps. i think that is why the pain level is high right now - the rituxan may have been helping it more than I thought it was. Now for it to kick in some more. The other thing is it is probably permanent now so that changes things too.... Anyhow the other thing is have you seen a rehab doctor for that foot? I have to say the difference after physio rehab (which was intensive) in my balance, gait and core strength was incredible. I wonder if they could do anything to help with that in any way. Just a suggestion there. It is scary thinking that it is getting worse and that part may be ms. Especially given the history with your sister. As for John I can't find the originial post but the braces at night and the braces during the day did help my carpal tunnel a little but the carpal tunnel release did the most. i know with the swelling in my wrists even now it would be numb with typing if not for that. I wish I could offer help with the neuropathy but really the only thing for me that helps is the gabapentin/keppra combination and the drowsiness is hard to handle if you were working and had to take the level I am. A timer to make him stop and exercise or ice every "x" minutes before starting again might help. I used to use an ice pack as a wrist rest - rather an ergonomic solution before all the ergonomics and that helped a little. Is your brother back? Hope his trip was great - I envy him in a way although I know it is scary for you. I am number 1 in line for your book at the library! Happy reading next week I figure. Has taken forever to get this far and if not here by Seattle I will probably be buying it. Kelly
From: Diane on 4 Aug 2008 08:55 kelly, you are so sweet to take the time to write this email! you also gave me my wake-up call. i think about you so often and what you've gone through due to the tnf drugs. i've been very resistant to seeing a neurologist and going through all that testing (which i went through 7 years ago when i had tingling in my fingers and feet while on enbrel). results were negative at that time (of course, those records have since been destroyed and i stupidly never got a copy. . . ), but given my orthopedist's concerns, i guess it is silly to not at least rule out ms once again. my rheumatologist does not think it's ms, but she's a bit cavalier about things, so the ball's in my court. i am so thrilled that you're finding relief with the rituxan. it blows my mind that you're gardening! i followed your old PT posts carefully with regard to balance and gait, and getting a referral for PT has been on my "to do" list for quite a while now! the issue for me is time. i spend so much time with doctors, that it's hard for me to work. i know you understand! yet if i lose my balance and break a hip, then i'd be a lot worse off, huh? as for john, he just got a referral for pt. i don't believe what he has is carpal tunnel, at least not totally. his pain started up near his shoulder and follows the median nerve down to his hand, so it seems something's impinging on the nerve in his shoulder/back. anyhow, he i hope the pt will help. he's pretty miserable. i'm going to make an appt with the neuro this morning, and i thank you for the nudge. you're one of my many heroes in asa. diane
From: Donna G. on 4 Aug 2008 09:30 Diane, Is it possible that besides doing so much work on the computer, that part of Johns issues might stem from carrying his camera and supplies over his shoulder or around his neck? If so, perhaps the PT can help him in that area. Best to the both of you!!! .. .. .. .. Donna .. .. .. .. 1.) ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2.) J.K.M.A.
From: loujeanb on 4 Aug 2008 11:27 Sounds like an entrapped ulnar nerve, like my mom had. They did the surgery. Her relief was even visible to me. -- Navy Take out the FISH to email me. "Diane" <dcham(a)aol.com> wrote in message news:066e2859-e7dd-49aa-9458-b384d4de252f(a)c58g2000hsc.googlegroups.com... > kelly, you are so sweet to take the time to write this email! you also > gave me my wake-up call. i think about you so often and what you've > gone through due to the tnf drugs. i've been very resistant to seeing > a neurologist and going through all that testing (which i went through > 7 years ago when i had tingling in my fingers and feet while on > enbrel). results were negative at that time (of course, those records > have since been destroyed and i stupidly never got a copy. . . ), but > given my orthopedist's concerns, i guess it is silly to not at least > rule out ms once again. my rheumatologist does not think it's ms, but > she's a bit cavalier about things, so the ball's in my court. i am so > thrilled that you're finding relief with the rituxan. it blows my mind > that you're gardening! > > i followed your old PT posts carefully with regard to balance and > gait, and getting a referral for PT has been on my "to do" list for > quite a while now! the issue for me is time. i spend so much time with > doctors, that it's hard for me to work. i know you understand! yet if > i lose my balance and break a hip, then i'd be a lot worse off, huh? > > as for john, he just got a referral for pt. i don't believe what he > has is carpal tunnel, at least not totally. his pain started up near > his shoulder and follows the median nerve down to his hand, so it > seems something's impinging on the nerve in his shoulder/back. anyhow, > he i hope the pt will help. he's pretty miserable. > > i'm going to make an appt with the neuro this morning, and i thank you > for the nudge. you're one of my many heroes in asa. > > diane
From: Diane on 4 Aug 2008 15:02
navy, his the median nerve, not the ulnar. my mom also had the ulnar nerve surgery. must be a mom thing. diane |