Secondary Progressive MS question
Question:
hi kate, the M.S. International foundation has a list of countries with MS Societies on their website, here — http://www.msif.org/en/global_ms_network/index.html you’d probably be surprised by some of the countries that show up — places where M.S. isnt’ as big a problem as in other areas — argentina, armenia, brazil, india, japan, etc. while countries with only a single M.S. society aren’t likely to have as much practical assistance to offer as countries with local chapters all over the place, contacting the society for the country-of-interest would at least let you know exactly what IS available in your cousin’s area. best regards, rose
Response:
"Joan Carter" <spamf…@sentex.ca> wrote in message
news:lkra61h792gj7iq2ka65acpe92uv5jgs6t@4ax.com… > On Tue, 19 Apr 2005 20:00:56 GMT, Thel <th…@shaw.ca> wrote in > alt.support.mult-sclerosis: >>I have become an infrequent lurker here and am so heartened by your >>post…Thank you from the readers of such caring, thoughtful and >>thorough writing. > Thel, I remember you from MS-Can-l. You are in BC as I recall. You ‘knew’ > me as > Joan Kennedy from Halifax. How are you? > — > Joan
hey joan that is THEL ,and she is form the mscan list too,,, i talked to her a few times,, now,, i was in that group a long long time ago,,,, maybe it was 1995 when i joined!!!! same time as this place,,,, i just dont like being moderated,,, i find that offensive,, so i left,,, i need to be free to speak,, so here i am!!!!! bobbyD
Response:
rose wrote: > best of good fortune, > rose
Thank You for your response! The deal is she is in a third worldesque country with very few resources. I could bring her here for treatment but that’s going to be cost prohibitive right now and I can’t look after her while she’s here so…all I can do is send information. Her wheelchair was like 40 years old. She spends most of her time alone and sleeps a lot. My heart just breaks for her! So I have no idea what meds she has access to but it did seem to me when I researched that her meds together would cause excessive tiredness, lethargy. I’ll make the suggestion that she reconsider other meds to bring up to the doctor and hopefully her daughters can spend time trying to exercise her limbs out a bit everyday. Thank you!
Response:
On Tue, 19 Apr 2005 20:00:56 GMT, Thel <th…@shaw.ca> wrote in alt.support.mult-sclerosis: >I have become an infrequent lurker here and am so heartened by your >post…Thank you from the readers of such caring, thoughtful and >thorough writing.
Thel, I remember you from MS-Can-l. You are in BC as I recall. You ‘knew’ me as Joan Kennedy from Halifax. How are you? — Joan
Response:
I for one say, Feel free to lurk Thel. You can learn alot from the people here. I know that I have and I’ve had this disease for what seems to be a life time. Well good luck to you and your cousin!! Tracey "Thel" <th…@shaw.ca> wrote in message
news:Yrd9e.1075153$8l.162757@pd7tw1no… – Hide quoted text — Show quoted text -> rose wrote: >> Herawood wrote: >>>Hello, >>>I recently reconnected with family members abroad and found out my >>>cousin has had MS for about 20 years. >> hi kate, >> … >> and make sure she’s got things to keep her interested in life. if she >> enjoys reading but has vision problems, large-print books and >> magazines. if she’s in a wired household, an adapted computer! if >> family members are nearby and available, they can accompany her on >> outings she might be interested in. >> best of good fortune, >> rose > Dear Rose, > I have become an infrequent lurker here and am so heartened by your > post…Thank you from the readers of such caring, thoughtful and thorough > writing. > Thel
Response:
Hello, I recently reconnected with family members abroad and found out my cousin has had MS for about 20 years. Starting as remitting/recurring and now secondary progressive. She is at this stage wheelchair bound and seemed to me unable to move much at all by herself. I was charged with seeing what treatments were available here in the US. All my research so far seems to indicate she may be too far gone. Can anything help make her symptoms better. She seems to suffer greatly from lethargy and of course no range of motion. She is currently taking Baclofen , Cloazepam , Pyridostigmine Bromide 60 mg. Any info would be appreciated. Thaks, Kate
Response:
In article <1112851834.322126.125…@g14g2000cwa.googlegroups.com>, "Herawood" <heraw…@aol.com> wrote: >Hello, >I recently reconnected with family members abroad and found out my >cousin has had MS for about 20 years. Starting as remitting/recurring >and now secondary progressive. She is at this stage wheelchair bound >and seemed to me unable to move much at all by herself. I was charged >with seeing what treatments were available here in the US. All my >research so far seems to indicate she may be too far gone. Can anything >help make her symptoms better. She seems to suffer greatly from >lethargy and of course no range of motion.
She would probably be well-served to see a doctor and a physical therapist. Range of motion can be "fixed" to some extent and it might also improve her outlook/lethargy. If she could get to move by herself a bit it would also improve her outlook and quality of life. >She is currently taking Baclofen , Cloazepam , Pyridostigmine Bromide >60 mg. Any info would be appreciated.
Whoa, that may be a component in why she is lethargic! Baclofen and clonazepam can make you tired and baclofen can DEFINITELY make you weak if you are sensitive to it (like I am…). Get thee to a doctor!!! (and good luck)
Response:
Herawood wrote: > Hello, > I recently reconnected with family members abroad and found out my > cousin has had MS for about 20 years. Starting as remitting/recurring > and now secondary progressive. She is at this stage wheelchair bound > and seemed to me unable to move much at all by herself. I was charged > with seeing what treatments were available here in the US. All my > research so far seems to indicate she may be too far gone. Can anything > help make her symptoms better. She seems to suffer greatly from > lethargy and of course no range of motion. > She is currently taking Baclofen , Cloazepam , Pyridostigmine Bromide > 60 mg. Any info would be appreciated. > Thaks, > Kate
hi kate, i’m curious why you’re checking up on treatments in the U.S. — is your cousin contemplating visiting the U.S. for treatment, or is the family interested in knowing what’s available, but not covered by insurance or programs in their area and contemplating paying for treatments themselves, or….? if she’s secondary progressive with superimposed relapses, the D.M. of choice among most U.S. neurologists would probably be betaseron. also approved in the U.S. for SPMS is novantrone, a chemotherapeutic med, given by infusion (at lower doses than it would be given for cancer). Pyridostigmine Bromide is approved in the U.S. for myasthenia gravis (sp?) and gulf war syndrome only, so she most likely WOULDN’T be on that. as was mentioned already, either a P.T./O.T. or other trained rehab person could work on range of motion with her. if she hasn’t got the ability to do ROM exercises, then passive range of motion — someone else moving her limbs for her — would also be a basic; keep contractures and such at bay. as was also mentioned, klonopin and baclofen have the potential to cause both tiredness and weakness. the Pyridostigmine Bromide (i’m copy/pasting it every time, LOL) info i found online says it should not be taken with any meds that cause drowsiness, or with muscle relaxers — is baclofen considered an exception to the muscle-relaxer no-no, and that’s why she’s taking it? baclofen helps a lot of people, zanaflex and valium do as well. most U.S. neurologists will write prescriptions for anti-fatigue meds; the first line is often symmetrel/amantadine, an anti-viral, anti-parkinsonian drug with increased energy as a side effect. many are also helped by provigil/modafinil, a ‘wakefulness-promoting’ agent, FDA-approved for narcolepsy. make sure her wheelchair is comfortable! people’s needs change s their bodies change, check the cushions and support and inquire about her comfort and feeling of safety, replace pads and wheels and all that when they get worn out. any other symptoms she’s having would or could be treated with meds — urinary problems, painful muscle spasms, burning sensations, depression. and make sure she’s got things to keep her interested in life. if she enjoys reading but has vision problems, large-print books and magazines. if she’s in a wired household, an adapted computer! if family members are nearby and available, they can accompany her on outings she might be interested in. best of good fortune, rose
Response:
- Hide quoted text — Show quoted text -rose wrote: > Herawood wrote: >>Hello, >>I recently reconnected with family members abroad and found out my >>cousin has had MS for about 20 years. > hi kate, > … > and make sure she’s got things to keep her interested in life. if she > enjoys reading but has vision problems, large-print books and > magazines. if she’s in a wired household, an adapted computer! if > family members are nearby and available, they can accompany her on > outings she might be interested in. > best of good fortune, > rose
Dear Rose, I have become an infrequent lurker here and am so heartened by your post…Thank you from the readers of such caring, thoughtful and thorough writing. Thel
