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Dr. Bob is Robert Hsiung, MD,
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Posted by Maxime on June 9, 2005, at 17:40:47
In reply to Re: Despair and Attitude, posted by dog on June 9, 2005, at 16:52:03
You see, that is why it's possible that you were had MS for 10 prior to 2003. Because 2 years is such a short time for it to progress. It's not impossible, but I am sure that you had it as early as you say you did.
I suffered depression and a child and a teen. So the depression comes biochemically and from the MS. Ugh, so complicated. But then in my 20's the mood swings start and I was eventually diagnoses with BP2.
The fatigue is AWFUL. Sounds weird to say that sometimes it's the worse part.
Maxime
> > Oh I forgot mention I go for the injections when I am having an attack. Nothing when I am not. When you had recurring/relasping what med did you take if any?
> >
> > Maxime
> i was just diagnosed for sure in jan/2005, so this is all i have known. it is recurring/remitting because i was given an MRI in 2003, but a subsequent one, i was told, showed it was not getting worse. then, in fall 2004, i fell really hard and broke some ribs and had another MRI and the neurologist said the one that i was told that showed it wasn't getting worse actually was and so i had a 3 hour MRI... then a Dec. 2004 lumbar puncture, then Jan 2005 the results showed positive MS also.
> i also went to Anthony Reder at the Univ. of Chicago and he agreed it was Secondary Progressive. my neuro is here in Peoria, IL but i wish i could see Dr. Reder on a regular basis, but its so far.
>
>
>
>
> >
> > > > Yes. I get that way. I get angry to. I only take drugs for my MS when I am having an episode though. I try not to think about it.
> > > >
> > > > I'm sorry you are having such a rough time. Hang in there. What type of MS do you have?
> > > >
> > > > Maxime
> > >
> > > Maxime: i have Secondary Progressive MS. i was just diagnosed and i am 45. its not good, but they think they caught it early. i was having "Recurring/Remitting", but now its the Secondary Progressive.
> > > i am taking Rebif injections (beta interferon) 3x per week.... i am on the full dose now which is 44 mcg.
> > > what kind of drug do you take and how do you know for sure you are having a recurrence?
> > > dog
> >
> >
>
>
Posted by dog on June 10, 2005, at 7:52:51
In reply to Re: Despair and Attitude, posted by Maxime on June 9, 2005, at 17:36:00
i just finished a great book: An Unquiet Mind, by a lady, a PhD in Psych. (can't remember the name) who struggles with BP... i highly recommend. its kind of an autobiography. its a fairly short book. shes also a poet so the writing is really well done and interspersed with poetry.
i don't have the bipolar part, just the depression, but the steroids really gave me an idea what the BP would be like... not good!
i agree the fatigue is sometimes the worst part. i took some amantidine today, but it doesn't seem to help me much but it does clear my sinuses some. the pain is bad too though. i also find myself searching for words more and forgetting things more easily. its scary.
i feel better after writing to you and hearing from you. thank you!
Posted by Maxime on June 13, 2005, at 9:03:05
In reply to Re: Despair and Attitude, posted by dog on June 10, 2005, at 7:52:51
I love that book! It is by Kay Redfield Jamison. I have a copy and I have read it about 10 times!
I'm glad our talk helped. It helped me too. When Cymbalta comes out in Canada next month or so, I plan to try it.
Take care,
Maxime> i just finished a great book: An Unquiet Mind, by a lady, a PhD in Psych. (can't remember the name) who struggles with BP... i highly recommend. its kind of an autobiography. its a fairly short book. shes also a poet so the writing is really well done and interspersed with poetry.
> i don't have the bipolar part, just the depression, but the steroids really gave me an idea what the BP would be like... not good!
> i agree the fatigue is sometimes the worst part. i took some amantidine today, but it doesn't seem to help me much but it does clear my sinuses some. the pain is bad too though. i also find myself searching for words more and forgetting things more easily. its scary.
> i feel better after writing to you and hearing from you. thank you!
>
Posted by dog on June 14, 2005, at 9:17:00
In reply to Re: Despair and Attitude » dog, posted by Maxime on June 13, 2005, at 9:03:05
my brother is in Canada right now. he is studying at a traditional chinese medical school in BC. he has given me some acupuncture treatments awhile back, but they didn't seem to help much. what do you think about the chinese philosophy of medicine?
what is your level of care in Canada? is it pretty good?
what do you think about medical marijuana and MS and what are the laws there regarding marijuana?
here they are very strict. i will not chance it.
Posted by Maxime on June 14, 2005, at 10:54:07
In reply to Alternative Medicine, posted by dog on June 14, 2005, at 9:17:00
Hi.
The level of care is good once you access it ... it's getting to it that is the problem. We also have a shortage of doctors. Many move to the US to work in the private system to earn more money.
Mental health is awful where I live. I live in Montreal and we have to see a psychiatrist according to our postal code! Luckily it doesn't work that way for other specialties. Well there would be an uproar anyway.
People have to wait a long time for elective surgeries. Even cancer patients often have to wait. Wait, wait, wait. I waited 9 months to see a psychiatrist. Also we have to go through our general practioner (GP) to get a referral to see a specialist. There are so many people without a GP that they end up in the ER. So our ERs are overcrowded. You can wait up to 48 hours to see a doctor. I once waited 3 days to get a psych bed.
I've never had acupuncture for my MS.
Our health care is a disaster. But we have good doctors and absolute idiots just like everywhere else!
Maxime
> my brother is in Canada right now. he is studying at a traditional chinese medical school in BC. he has given me some acupuncture treatments awhile back, but they didn't seem to help much. what do you think about the chinese philosophy of medicine?
>
> what is your level of care in Canada? is it pretty good?
>
> what do you think about medical marijuana and MS and what are the laws there regarding marijuana?
> here they are very strict. i will not chance it.
>
>
>
Posted by dog on June 14, 2005, at 13:22:10
In reply to Re: Alternative Medicine, posted by Maxime on June 14, 2005, at 10:54:07
i am very fortunate: i can call my doctors anytime. usually, i just speak to a nurse and tell her/him my problem, but i could call and request to speak to a doctor and soon have one on the line who would call me back. usually, i get an appt., but i have also just walked in several times and saw him.
i could go right now, without calling, and walk in to my Doctor's office (GP) and see him in just a few minutes. Sometimes, i get in so quickly, i don't want to go due to an interest in the waiting room magazines! my insurance is very good. i pay a $10.00 copay per visit.... i'm not exactly sure how much my insurance pays him, but if i don't have $10.00 at that time, i just have them send me a bill.
two weeks ago, i was hurting pretty bad and i called the neuro nurse. my neurologist was gone and the usual neuro nurse (Marianne) wasn't there, but Dennis, another nurse, (i know him by name) asked one of the other doctors who were there and he phoned me in a Rx for tylenol #3s w/ codeine and i simply went to the pharmacy to get it. its kind of a waste though, as i don't really like them... they make me feel kind of sick to my stomach and i feel very drugged.
my neurologist is harder to get to see than my GP, although i can receive immediate attention from his nurse who is a "Multiple Sclerosis Nurse", that is, she has had special additional training in MS. She has a 4 year degree in Nursing (BSN), a Masters Degree in Nursing (MSN) plus additional training in MS. she will call me back almost immediately if i don't get her the 1st time...all i have to do is leave her a msg. it usually takes a few days to a week to see the neurologist.
not everyone has that ease though. some have it more difficult here in the U.S.
when Bill Clinton first came into office in 1992, his wife Hillary began a movement to change to a medical system like Canadas. though it sort of failed, i think we will someday see some radical changes. many don't have insurance and have to rely on the government medicaid system...not sure how bad that is.
i saw another neurologist at the University of Chicago in Chicago for 2nd opinion in Feb. 2005. i brought him copies of my MRI and CT scans... i spent over an hour with him and when i got ready to go he handed me the scans and told me to be careful with them as there were probably over $10,000.00 worth of scans there! this really showed to me how expensive stuff is. i know i should be grateful for what i have and for doctors and technology and things and i am not often that way.
Posted by dog on June 14, 2005, at 13:33:04
In reply to Re: Alternative Medicine, posted by Maxime on June 14, 2005, at 10:54:07
Maxime, you didn't tell me what you thought of medical marijuana and MS... are people in Canada using it for their MS? what are the laws restricting it? here the laws are very strict and so strict i will not chance it! i don't need any more troube than i already have.
Posted by ed_uk on June 14, 2005, at 14:36:00
In reply to Medical Marijuana/ MS / Canada, posted by dog on June 14, 2005, at 13:33:04
Hi Dog,
http://www.medicalnewstoday.com/medicalnews.php?newsid=23299
~Ed
Posted by dog on June 14, 2005, at 16:49:27
In reply to Sativex » dog, posted by ed_uk on June 14, 2005, at 14:36:00
> Hi Dog,
>
> http://www.medicalnewstoday.com/medicalnews.php?newsid=23299
>
> ~Ed
>
>Hi Ed,
thanks for the info. do you know anyone who takes it? i wonder where the good old U.S. of A. is situated on the question of this new drug. do you know? we'll probably never see it or at least it would take a lifetime to get approved.
my neurologist, who is over 60, told me he would never prescribe any medical marijuana product as it was too addictive. it is illegal in Illinois, my state, anyway. i think there are a few states that might allow it, but my state of Illinois is pretty conservative.my pain is such that at times it is pretty unbearable. i have taken muscle relaxers and tylenol #3s, but don't like the side effects.
i used to smoke marijuana when i was a kid, but quit when i was 20. i became a born-again christian and gave all the partying up for a much richer existence. now, at 45, with the MS pain and all, i might be tempted to try it again, but i would not do it illegally. as i said before, i have enough trouble right now w/out breaking the law.... i know a guy who was found with 1 pound of it a few years ago and was busted big-time: a felony.
i wonder what other US of A people think? i have heard one can smoke marijuana in Canada w/out fear of prosecution... is this correct?
you Canadian folks have us U.S. people beat on a lot of fronts.
Posted by ed_uk on June 14, 2005, at 18:06:11
In reply to medical marijuana/Sativex/ethics, posted by dog on June 14, 2005, at 16:49:27
Hi Dog,
>.......do you know anyone who takes it?
No, it's not approved in the UK. Nevertheless, about 400 people in the UK are currently being treated with Sativex with the permission of the MHRA - our medicines regulatory agency, a bit like your FDA.
>i wonder where the good old U.S. of A. is situated on the question of this new drug. do you know?
I've no idea!
>.......we'll probably never see it or at least it would take a lifetime to get approved.
I think it might get approved..........Marinol (THC aka dronabinol: the major active ingredient of cannabis) is already approved in the US.
http://www.rxlist.com/cgi/generic2/drona.htm
http://www.rxlist.com/cgi/generic2/drona_ids.htm>........my pain is such that at times it is pretty unbearable.
Do you suffer from neuropathic/nerve pain? Do you suffer from muscle spasm?
For muscle spasm you could try........
Baclofen (Lioresal)
Dantrolene (Dantrium)
Tizanidine (Zanaflex)For neuropathic pain you could try gabapentin (Neurontin). Have you tried it? Oxcarbazepine (Trileptal) might also be helpful.
Does the Tylenol 3 help your pain? What side effects are you having?
>i might be tempted to try it again, but i would not do it illegally........
I would. Having said that, it's unusual for people to get arrested for possession of small quantities of cannabis now that it's been 'downgraded' to a class C drug in the UK.
Kind regards,
Ed.
Posted by dog on June 16, 2005, at 9:02:14
In reply to Re: medical marijuana/Sativex/ethics » dog, posted by ed_uk on June 14, 2005, at 18:06:11
Ed, that was one of the best emails i think i have ever had! the info. esp. will help. i am a newbie w/ MS... don't have much experience and/or knowledge of it but am learning albeit slowly. my pain is such that i sometimes hurt all over. its like the morning after a car wreck or an accident kind of pain, just all over. esp. legs and arms but certainly not limited to them, also back and sides, etc.
tylenol #3s do help but make me feel "drugged" esp. after i get up the next morning. if i take a nap on my day off, i am esp. sluggish all day. one of my problems is fatigue. have tried amantidine (sp?), but it doesn't help much i don't think.... will mention those other drugs you have told me about though.
i have an awful time getting up in the morning w/ pain and fatigue being the main problems... i have missed an inordinate amount of work. some drugs seem to make it worse. the depression is being exacerbated by the Rebif, i believe, so i am taking 120 mg of Cymbalta a day.i've tried :
Baclofen (Lioresal)
Tizanidine (Zanaflex)and these helped me some, but they make me feel overly sluggish.
i haven't tried this:
> Dantrolene (Dantrium)
will try the other things you wrote re pain.thanks, dog
Posted by ed_uk on June 16, 2005, at 17:04:27
In reply to Re: medical marijuana/Sativex/ethics, posted by dog on June 16, 2005, at 9:02:14
Hi Dog,
>Ed, that was one of the best emails i think i have ever had!
:-)
>my pain is such that i sometimes hurt all over. its like the morning after a car wreck or an accident kind of pain, just all over. esp. legs and arms but certainly not limited to them, also back and sides, etc.
Could you see a pain specialist? Each type of pain needs to be individually identified and treated. Neuropathic pain (pain due to nerve damage) can be treated with drugs such as gabapentin (Neurontin). Your Cymbalta may also relieve neuropathic pain. Dantrolene (Dantrium) - a skeletal muscle relaxant, is only effective in treating pain due to muscle spasm.
>tylenol #3s do help but make me feel "drugged".......
Perhaps you could try a different opioid/acetaminophen combination such as oxycodone/acetaminophen (Percocet) or hydrocodone/acetaminophen (Vicodin).
>one of my problems is fatigue. have tried amantidine (sp?), but it doesn't help much i don't think....
The supplement acetyl L-carnitine may be of some help...........
J Neurol Sci. 2004 Mar 15;218(1-2):103-8.
Comparison of the effects of acetyl L-carnitine and amantadine for the treatment of fatigue in multiple sclerosis: results of a pilot, randomised, double-blind, crossover trial.
Tomassini V, Pozzilli C, Onesti E, Pasqualetti P, Marinelli F, Pisani A, Fieschi C.
Department of Neurological Sciences, University of Rome "La Sapienza", viale dell' Universita 30, Rome 00185, Italy.
Treatment with acetyl L-carnitine (ALCAR) has been shown to improve fatigue in patients with chronic fatigue syndrome, but there have been no trials on the effect of ALCAR for treating fatigue in multiple sclerosis (MS). To compare the efficacy of ALCAR with that of amantadine, one of the drugs most widely used to treat MS-related fatigue, 36 MS patients presenting fatigue were enrolled in a randomised, double-blind, crossover study. Patients were treated for 3 months with either amantadine (100 mg twice daily) or ALCAR (1 g twice daily). After a 3-month washout period, they crossed over to the alternative treatment for 3 months. Patients were rated at baseline and every 3 months according to the Fatigue Severity Scale (FSS), the primary endpoint of the study. Secondary outcome variables were: Fatigue Impact Scale (FIS), Beck Depression Inventory (BDI) and Social Experience Checklist (SEC). Six patients withdrew from the study because of adverse reactions (five on amantadine and one on ALCAR). Statistical analysis showed significant effects of ALCAR compared with amantadine for the Fatigue Severity Scale (p = 0.039). There were no significant effects for any of the secondary outcome variables. The results of this study show that ALCAR is better tolerated and more effective than amantadine for the treatment of MS-related fatigue.
Other treatments for fatigue due to MS........
Modafinil (Provigil) - may be effective for relieving excessive daytime drowsiness.
Traditional stimulants such as amphetamine (Adderall), dextroamphetamine (Dexedrine) and methylphenidate (Ritalin, Concerta) may also be of some help.
>Dantrolene (Dantrium)
Unlike baclofen and tizanidine, dantrolene doesn't cause drowsiness. Dantrolene does sometimes cause muscle weakness though.
Kind regards,
Ed.
Posted by Maxime on June 18, 2005, at 13:01:01
In reply to Medical Marijuana/ MS / Canada, posted by dog on June 14, 2005, at 13:33:04
> Maxime, you didn't tell me what you thought of medical marijuana and MS... are people in Canada using it for their MS? what are the laws restricting it? here the laws are very strict and so strict i will not chance it! i don't need any more troube than i already have.
I'm going to answer you on the alternative board.
Maxime
Posted by ed_uk on June 21, 2005, at 22:03:56
In reply to Re: medical marijuana/Sativex/ethics, posted by dog on June 16, 2005, at 9:02:14
Are you there? Did you see my post? Hope so :-)
~Ed
Posted by dog on June 24, 2005, at 14:58:14
In reply to Dog??? » dog, posted by ed_uk on June 21, 2005, at 22:03:56
> Are you there? Did you see my post? Hope so :-)
>
> ~Edyes thanks so much! i have been away from my office computer for a few days and my laptop at home is not working very well.
currently, i am going to get off the Rebif i have been doing since April 2005 and will soon start copaxone, a non-interferon based therapy. perhaps that will help the depression, etc. only thing is, i have to take injections every day instead of just 3x weekly.
i hope this works as well as the Rebif as far as preventing the MS progressing.
Posted by ed_uk on June 24, 2005, at 15:40:06
In reply to Re: Dog???/ now going off Rebif, posted by dog on June 24, 2005, at 14:58:14
Hi Dog,
>copaxone
Let us know how it goes :-)
~Ed
Posted by dog on June 25, 2005, at 16:37:28
In reply to Re: Dog???/ now going off Rebif, posted by ed_uk on June 24, 2005, at 15:40:06
> Hi Dog,
>
> >copaxone
>
> Let us know how it goes :-)
>
> ~Edi will, Ed, and thank you again for the great advice. i haven't been able to follow up on your suggestions yet. i'll probably wait a bit after i begin the other medicine to try them. by giving me the abstract re the anti-fatigue meds, i will really impress my neurologist!
dog
Posted by ed_uk on June 25, 2005, at 21:17:01
In reply to Re: Dog???/ now going off Rebif, posted by dog on June 25, 2005, at 16:37:28
Hi Dog,
>thank you again
You're welcome :-)
~Ed
Posted by dog on August 9, 2005, at 12:27:57
In reply to Re: Dog???/ now going off Rebif, posted by dog on June 25, 2005, at 16:37:28
have been on copaxone for over 2 weeks now. not near as many side effects as Rebif.. however, a 2nd opinion Doc told me in Feb 05 i have SPMS, and if that's so, Copaxone might not be the best thing for it... does anyone know?
thanks, dog> > Hi Dog,
> >
> > >copaxone
> >
> > Let us know how it goes :-)
> >
> > ~Ed
>
> i will, Ed, and thank you again for the great advice. i haven't been able to follow up on your suggestions yet. i'll probably wait a bit after i begin the other medicine to try them. by giving me the abstract re the anti-fatigue meds, i will really impress my neurologist!
> dog
>
Posted by ed_uk on August 9, 2005, at 13:08:00
In reply to Re: Dog???/ now going off Rebif » dog, posted by dog on August 9, 2005, at 12:27:57
Hi Dog,
As far as I know, Copaxone works best for relapsing-remitting MS. Has your neurologist suggested any other treatments?
Kind regards
~Ed
Posted by dog on August 9, 2005, at 14:02:23
In reply to Re: Dog???/ now going off Rebif » dog, posted by ed_uk on August 9, 2005, at 13:08:00
Ed,
thanks for reply...in Feb of 2005 i got a 2nd opinion, after i was diagnosed w/ MS in Jan. 2005. the 2nd opinion Dr. from the Univ. of Chicago, thinks its SPMS. the Dr. down here in Peoria, IL doesn't think its necessarily SPMS yet.
i was complaining to the Dr. here in Peoria about the Rebif side-effects, esp. the depression worsening. so he has given me a non-interferon drug. not sure if thats best though.
what do you think?
Posted by ed_uk on August 9, 2005, at 14:42:12
In reply to Re: Dog???/ now going off Rebif, posted by dog on August 9, 2005, at 14:02:23
Hi!
I think Copaxone is a sensible alternative to interferon.
~Ed
Posted by dog on August 9, 2005, at 15:02:47
In reply to Re: Dog???/ now going off Rebif » dog, posted by ed_uk on August 9, 2005, at 14:42:12
Ed,
i agree of course, but what if i have SPMS, which i think, and the MS Specialist Doctor in Chicago thinks, i most likely do have? Copaxone is fine for RRMS, but is it a sensible alternative to interferon for SPMS?
do you think Copaxone works as well as interferon for RRMS?
dog
> Hi!
>
> I think Copaxone is a sensible alternative to interferon.
>
> ~Ed
Posted by ed_uk on August 9, 2005, at 15:41:48
In reply to Re: Dog???/ now going off Rebif, posted by dog on August 9, 2005, at 15:02:47
Hi,
>Copaxone is fine for RRMS, but is it a sensible alternative to interferon for SPMS?
I don't know. In the UK at least, only interferon is approved for SPMS.
>...do you think Copaxone works as well as interferon for RRMS?
I don't know enough about Copaxone to answer that question. I mainly know about psychiatry!
Kind regards
~Ed
Posted by dog on August 9, 2005, at 16:15:40
In reply to Re: Dog???/ now going off Rebif » dog, posted by ed_uk on August 9, 2005, at 15:41:48
Ed,
sorry to "put you on the spot" as we say here in the states, but i feel i have to know some of this stuff and the literature, at least the stuff i've seen so far, is so vague.i have never, ever been answered so well or so precisely as these posts you have given me. i am very grateful. i have gotten more info. from you than my other Dr.s! i can't thank you enough.
dog (from a very small town in West Central Illinois)
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Dr. Bob is Robert Hsiung, MD,
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