MS Conference Information (please give to your nerurologist!)
Question:
In article <b9bc0b9a.0108240740.3d2af…@posting.google.com>, zulo…@hotmail.com (Zu Snooze Zu Loose) writes: >Sorry to go on like this. I’m really struggling. It’s not that I’m >unwilling to accept the diagnoses. Actually I’m happy to… if it’s >the right one. I just want to be sure – is that possible?
"Happy" to accept it? Kathi
Response:
Well, ya. I’m sure we all remember the frustrating time(s) when all kinds of things were happening to our bodies and no one could tell us why – or at least what they told us didn’t quite add up. For me, it felt like I was waiting… always waiting, wondering, imagining the worst but trying not to expect it. When I was finally diagnosed with MS and EDS I was relieved. I finally knew what was wrong with me and the things I’d been struggling with my whole life made sense to me. When you know what you’re facing you can begin to address it. I just want to know for sure what I’m dealing with so that I can get on with the business of living my life. Well, that’s my feeling about it anyway. It’s probably not everyone’s. I’ve never been accused of being ‘normal’. ;-) Sue – Hide quoted text — Show quoted text -kamatth…@aol.com (Kathi Matthews) wrote in message <news:20010831183259.21495.00007909@nso-ch.aol.com>… > In article <b9bc0b9a.0108240740.3d2af…@posting.google.com>, > zulo…@hotmail.com (Zu Snooze Zu Loose) writes: > >Sorry to go on like this. I’m really struggling. It’s not that I’m > >unwilling to accept the diagnoses. Actually I’m happy to… if it’s > >the right one. I just want to be sure – is that possible? > "Happy" to accept it? > Kathi
Response:
Hi Laura, Thanks for the reply!! Yes, he did those things the first time – don’t recall him doing all of them at follow ups. I was just wondering if there was anything else. He mentioned something in passing a couple of times about wondering if there was nerve entrapment in my arm – because of the numbness in my fingers. I think I’ll ask him to check that out – I think the test required is an evoked potentials test??? Does that sound right? Sue – Hide quoted text — Show quoted text -"Mona" <mona_ra…@hotmail.com> wrote in message <news:9m6103$jl3n$1@ID-95032.news.dfncis.de>… > Does the doctor do an exam? A neurological exam would involve checking your > strength (ie i push on his hands with both hands) balance (think that is > what it checks..) ie walking down a long hall, reflex checks arms and legs.. > A variety of things like that. A whole variety of things like that – takes > about 10-15 minutes. > — > Laura
Response:
- Hide quoted text — Show quoted text -Joan Carter <jecar…@gmx.net> wrote in message <news:63edotkesrdbp3sbri53t7vm27ft38cpkn@4ax.com>… > On 24 Aug 2001 01:29:17 -0700, gfort…@yhti.net (Gary) wrote: > }Joan, glad you found the right blend of physicians. It is not > }uncommon I understand for MS patients to look around till they find > }the right doctor. Being a physician is even harder, especially when > }you challenge their knowledge and treatment options 
> Yes, I know. I have always heard that… "Nurses and doctors make the > worst patients"…. Not True. In the last few years of my nursing > career I went out of my way to give that little extra to patients who > were in the medical profession, or whose parents were. (I was a > paediatric nurse in NICU, then an enterostomal therapist in a > paediatric hospital). I was so tired of hearing those folks judged > before they opened their mouths. I know several nurses who will not > tell what their profession is if they have to go to hospital. Seems > unfair. We are no better nor worse than other patients. Some are > great, some are a pain in the ass. > — > Joan > Everyone has a photographic memory. Some just don’t have film.
Joan, I guess I fit into the pain in the butt category . My point is that when I meet physicians who know less than I do (and are board certified neurologists) about MS, then that is what I mean by "making the worst patient". Also I never said anything about nurses . Gary
Response:
zulo…@hotmail.com (Zu Snooze Zu Loose) wrote in message <news:b9bc0b9a.0108260631.7e34e9df@posting.google.com>… – Hide quoted text — Show quoted text -> Hi Laura, > Thanks for the reply!! Yes, he did those things the first time – > don’t recall him doing all of them at follow ups. I was just > wondering if there was anything else. He mentioned something in > passing a couple of times about wondering if there was nerve > entrapment in my arm – because of the numbness in my fingers. I think > I’ll ask him to check that out – I think the test required is an > evoked potentials test??? Does that sound right? > Sue > "Mona" <mona_ra…@hotmail.com> wrote in message <news:9m6103$jl3n$1@ID-95032.news.dfncis.de>… > > Does the doctor do an exam? A neurological exam would involve checking your > > strength (ie i push on his hands with both hands) balance (think that is > > what it checks..) ie walking down a long hall, reflex checks arms and legs.. > > A variety of things like that. A whole variety of things like that – takes > > about 10-15 minutes. > > — > > Laura
Sue, I cannot discern any diagnosis which requires an onsite history (your physician needs to spend the time listening to the patient and asking questions) and also perform a neurological, physical exam, and appropriate testing by your neurologist. Bottom line is that the exam described above is an accurate description of a neuro exam. Here are examples of neurological examination techniques which are taught to most first year medical students (sorry, but I must use medical terminology, so bring these terms to your physician): cranial nerve testing (check eye movement, shoulder shrug, stick out your tongue etc), reflex testing (usually hyperreflexic in MS), fundoscopic examination of the eyes (looking for optic nerve damage), pinprick (testing for loss of sensation), rhombergs test (test for loss of balance while standing still with your eyes shut). I used to this testing in less than 15 minutes with a full physical exam . Good luck, Gary
Response:
Does the doctor do an exam? A neurological exam would involve checking your strength (ie i push on his hands with both hands) balance (think that is what it checks..) ie walking down a long hall, reflex checks arms and legs.. A variety of things like that. A whole variety of things like that – takes about 10-15 minutes. — Laura This troll here has sticky out ears. — This troll that troll, A children’s Pop up book by Mick InkPen Member of the Mercury Aspartame Amalgam Gluten Free Dairy Free Lyme Multiple Sclerosis Society. "Zu Snooze Zu Loose" <zulo…@hotmail.com> wrote in message news:b9bc0b9a.0108240740.3d2afd71@posting.google.com… > gfort…@yhti.net (Gary) wrote in message
<news:460df1f9.0108200119.155fd61@posting.google.com>… – Hide quoted text — Show quoted text -> > … If your physician does not perform a thorough > > neurological exam at each visit, does not give the time to listen to > > you, or does not keep up with the clinical literature and latest > > conference information, find another neurologist. This is why I am on > > my third neurologist. > Gary, or anyone who can help, > What would a thorough neurological exam entail. I was diagnosed based > on two relapses and two MRIs. No other tests were done. At my follow > ups no additional tests were done – just questions and answers about > how I was feeling. I was diagnosed in May and I’m preparing to start > taking Copaxone and having a hard time feeling comfortable about it. > What other tests might be needed/helpful? Relapse one was loss of > feeling on my left side (arm and legs, two fingers were worst and > feelng in them has not returned). Second relapse was vertigo – and > worsening of eyesight. What if there’s really an entrapped nerve in > my arm (ulnar), what if the worsening of eyesight was expected (I’ve > always had eyesight problems), and the vertigo was related to some > other balance/inner ear issue (I’m hearing a drum pounding in the left > ear when on the phone or surrounded by noise)? What if the plaques on > my brain are related to something other than MS? My grandfather had > Parkinson’s – could it be that instead? I was diagnosed with EDS as > well so that would account for pain and fatigue. Not sure what else, > other than MS, would explain the memory and thinking problems. > Sorry to go on like this. I’m really struggling. It’s not that I’m > unwilling to accept the diagnoses. Actually I’m happy to… if it’s > the right one. I just want to be sure – is that possible? > Thanks for listening. > Sue
Response:
On 24 Aug 2001 01:29:17 -0700, gfort…@yhti.net (Gary) wrote: }Joan, glad you found the right blend of physicians. It is not }uncommon I understand for MS patients to look around till they find }the right doctor. Being a physician is even harder, especially when }you challenge their knowledge and treatment options
Yes, I know. I have always heard that… "Nurses and doctors make the worst patients"…. Not True. In the last few years of my nursing career I went out of my way to give that little extra to patients who were in the medical profession, or whose parents were. (I was a paediatric nurse in NICU, then an enterostomal therapist in a paediatric hospital). I was so tired of hearing those folks judged before they opened their mouths. I know several nurses who will not tell what their profession is if they have to go to hospital. Seems unfair. We are no better nor worse than other patients. Some are great, some are a pain in the ass. — Joan Everyone has a photographic memory. Some just don’t have film.
Response:
Gary, When you practiced was it in/near San Francisco? My neuro says he knows but has lost contact with a neuro who has MS that I might like to speak with regarding dietary issues. My neuro says that this other neuro belileves he has had some success with dietary modifications Are you possibly that man? Roy
Response:
On 20 Aug 2001 02:19:18 -0700, gfort…@yhti.net (Gary) wrote: >Premenstrual Worsening >In a small study[25] involving 28 women with MS (mean age, 40 years; >mean disease duration, 8 years), 78% had premenstrual worsening of leg >weakness, pain, and nocturia, as detected by a daily questionnaire. This study >adds to a small but growing literature reporting fluctuations in MS symptoms >related to the menstrual cycle. This small but prospective study should be >pursued in a larger patient population.
I would hope to see this examined further. On one occassion I had a definite worsening of existing symptoms during my period. Cramps, backache and a bitchy ‘tude plus fatigue, a limp and and a tightly wound fist. Not a pretty sight…damn near drove the family out to a hotel ) Rhonda
Response:
A Dr. with MS. So at least you can understand the technical lingo What about Procarin? It sounds so good but i can’t find a physician who will prescribe for me. If it doesn’t work for me no loss, right? Any suggestions on finding a physician who will stick his/her neck out?
Response:
On 20 Aug 2001 02:19:18 -0700, gfort…@yhti.net (Gary) wrote: }I am now retired due to my disability and due to my continual }relapsing condition cannot answer personal email questions. Join }medscape.com }It is free and is provides useful clinical information. A clinically }informed patient is a well armed patient.
Gary, you are welcome here. I will not send you email questions. It is good to get your input though. I feel very lucky with my physicians, general practitioner and neurologist. Hmm, wonder if the Canadians are more interested in M.S. There are a few turkeys, but I have only run across one myself. Hope this newsgroup helps. — Joan Everyone has a photographic memory. Some just don’t have film.
Response:
joanns…@aol.com (JoannScan) wrote in message <news:20010821192634.01436.00001643@mb-cj.aol.com>… > A Dr. with MS. So at least you can understand the technical lingo What about > Procarin? It sounds so good but i can’t find a physician who will prescribe > for me. If it doesn’t work for me no loss, right? Any suggestions on finding > a physician who will stick his/her neck out?
Here is a site on procarin which indicates it contains histamine and caffeine. But who knows what other ingrediants or bioavailability (how well mixed)being a non-regulated (not FDA approved) treatment. This alternative therapy might fit into the area of bee venom treatment(which has not borne out in recent clinical trials) and the caffeine may just help with fatigue: http://www.themedicineshoppe.on.ca/procarin_home.htm It appears to be an alternative treatment and I cannot provide medical advice on the appropriateness of use, nor point to any clinical trial data which is needed for FDA approval. This is the most likely reason for physicians will not prescribe. There are many "alternative treatments" out there but I am not sure I would buy into them unless they underwent clinical trial study success. Best to bring it to your attention of your neurologist prior to starting any non-MS and Neurological Societys’ endorsed treatments.
Response:
roy…@aol.com (Roygus) wrote in message <news:20010820055322.05433.00000008@mb-cn.aol.com>… > Gary, > When you practiced was it in/near San Francisco? My neuro says he knows but has > lost contact with a neuro who has MS that I might like to speak with regarding > dietary issues. My neuro says that this other neuro belileves he has had some > success with dietary modifications Are you possibly that man? > Roy
Roy, afraid only time I spent in San Fran was with the Army. I would like to learn more what dietary modifications people feel are successful. I have not seen much in clinical trial studies on this subject and MS. Last, I do take antioxidant type vitamin supplementation recommended and prescribed by my previous neurologists and rehab specialist: B2, folate, vitamin c (also for bladder acidity and neurogenic bladder), Isonine, and vitamin D/Calcium With all the above there can be side-effects and always recommend discussing with your private neurologist prior to starting.
Response:
gfort…@yhti.net (Gary) wrote in message <news:460df1f9.0108200119.155fd61@posting.google.com>… > … If your physician does not perform a thorough > neurological exam at each visit, does not give the time to listen to > you, or does not keep up with the clinical literature and latest > conference information, find another neurologist. This is why I am on > my third neurologist.
Gary, or anyone who can help, What would a thorough neurological exam entail. I was diagnosed based on two relapses and two MRIs. No other tests were done. At my follow ups no additional tests were done – just questions and answers about how I was feeling. I was diagnosed in May and I’m preparing to start taking Copaxone and having a hard time feeling comfortable about it. What other tests might be needed/helpful? Relapse one was loss of feeling on my left side (arm and legs, two fingers were worst and feelng in them has not returned). Second relapse was vertigo – and worsening of eyesight. What if there’s really an entrapped nerve in my arm (ulnar), what if the worsening of eyesight was expected (I’ve always had eyesight problems), and the vertigo was related to some other balance/inner ear issue (I’m hearing a drum pounding in the left ear when on the phone or surrounded by noise)? What if the plaques on my brain are related to something other than MS? My grandfather had Parkinson’s – could it be that instead? I was diagnosed with EDS as well so that would account for pain and fatigue. Not sure what else, other than MS, would explain the memory and thinking problems. Sorry to go on like this. I’m really struggling. It’s not that I’m unwilling to accept the diagnoses. Actually I’m happy to… if it’s the right one. I just want to be sure – is that possible? Thanks for listening. Sue
Response:
- Hide quoted text — Show quoted text -Joan Carter <jecar…@gmx.net> wrote in message <news:78e2ot8k5oela0k0ci6luqo84pehr3pkhe@4ax.com>… > On 20 Aug 2001 02:19:18 -0700, gfort…@yhti.net (Gary) wrote: > }I am now retired due to my disability and due to my continual > }relapsing condition cannot answer personal email questions. Join > }medscape.com > }It is free and is provides useful clinical information. A clinically > }informed patient is a well armed patient. > Gary, you are welcome here. I will not send you email questions. > It is good to get your input though. I feel very lucky with my > physicians, general practitioner and neurologist. Hmm, wonder if the > Canadians are more interested in M.S. There are a few turkeys, but I > have only run across one myself. Hope this newsgroup helps. > — > Joan > Everyone has a photographic memory. Some just don’t have film.
Joan, glad you found the right blend of physicians. It is not uncommon I understand for MS patients to look around till they find the right doctor. Being a physician is even harder, especially when you challenge their knowledge and treatment options
Response:
I am a physician with MS, probably reaching secondary progressive. Bottom line is that I have found few physicians, even neurologists, keeping up to date in the latest information on the subject. I am on my 3rd neurologist since my diagnosis in 1998 who is now using pulse dose therapy(IV prednisone therapy) which is discussed in the recent American and European conference information. What is most enlightening is that IV steroids may delay demylination contrary to previous clinical outcomes. Also Rebif shows better outcomes in multicenter clinical trials than avonex. Push your congressman and FDA for approval of this medication in the USA because avonex has single drug approval from the FDA. In fact, copaxone and avonex are not approved some places overseas while rebif is. This will be a major political issue, in my humble opinion. Push your doctor to keep up on this disease, and the current treatment options and diagnostic testing because the research is moving ahead and changing rapidly. If your physician does not perform a thorough neurological exam at each visit, does not give the time to listen to you, or does not keep up with the clinical literature and latest conference information, find another neurologist. This is why I am on my third neurologist. I am now retired due to my disability and due to my continual relapsing condition cannot answer personal email questions. Join medscape.com It is free and is provides useful clinical information. A clinically informed patient is a well armed patient. Hope this information helps. Gary European Conference July, 2001: http://www.medscape.com/Medscape/CNO/2001/WCNCME/PrintDay.cfm?confere… 123&day_num=1 A Global Perspective on Multiple Sclerosis Patricia K. Coyle, MD, Syed Rizvi, MD, MBBS The 17th World Congress of Neurology included a wealth of presentations about multiple sclerosis (MS). The scope of information provided a truly global perspective on the investigations into the pathophysiology, epidemiology, and management of MS. MS Main Theme The day-long MS Main Theme section involved 10 presentations comprising a broad spectrum of topics ranging from genetic epidemiology to rehabilitation, and included a case discussion. Genetics Dr. D.A.S. Compston, from Cambridge, UK, discussed the genetics of MS.[1] He noted that there are genes associated with increased disease risk, as well as disease severity, and reviewed a number of candidate genes involving immune/inflammatory, trophic, and CNS factors. MS shows genetic heterogeneity, so linked genes are likely to differ between distinct MS subgroups. It will be critical to identify and examine meaningful subsets for gene analysis. Immunopathology Dr. H. Lassman,[2] from Vienna, Austria, reviewed his work on immunopathologic heterogeneity in MS, which focuses on the pathology of active brain plaques based on degree of inflammation, presence of antibody/activated complement, oligodendrocyte loss, and remyelination. These observations have been made on a relatively small dataset; many of the brain samples came from patients with an atypical presentation. This raises concern about the ultimate generalization of this cut-and-dry 4-pattern division. His presentation stimulated a provocative discussion about whether ischemic injury could be a critical factor in the distal oligodendrogliopathy pattern III. Axon damage occurs during active demyelination, most likely due to a release of toxic factors by macrophages, the most plentiful cell population within active lesions. Axon damage also occurs in chronic inactive plaques, which show no remyelination, implying 2 distinct mechanisms. Dr. H. Wekerle,[3] from Munich, Germany reviewed the immunopathogenesis of MS. In addition to discussing the role for autoreactive T cells, local glia, macrophages, and myelin-specific B cells, he emphasized the growing appreciation of the importance of neurons, which help to regulate local immune reactions within the central nervous system (CNS) microenvironment. A related study[4] evaluated the role of apoptosis (programmed cell death) in removing autoreactive T cells. Activated T cells were examined in cerebrospinal fluid (CSF) and serum of patients with MS, patients with other neurologic disease, and healthy controls. CSF T cells from MS patients showed much higher levels of survivin (an antiapoptosis protein). Survivin levels were also elevated (although less marked) in peripheral blood T cells of patients with MS. These findings were interpreted to indicate impaired apoptosis in MS, which could play a role in allowing an ongoing immune attack against the CNS. Axonal Conduction Dr. K. Smith,[5] from London, UK, discussed the role of axonal conduction in MS. Axonal conduction can be impaired by demyelination, inflammation, or degeneration of the axon itself. Inflammatory factors such as nitric oxide, the pentapeptide QYNAD, and ion channel antibodies can produce reversible conduction block. Conduction block can be circumvented by insertion of sodium channels into the axolemma and development of internodal excitability. When demyelination is severe, or when axons degenerate, permanent conduction loss occurs. Axon structure and function is an exciting area that will provide a new therapeutic target for development over the next few years. Animal Models, Imaging Techniques, Future Therapies Others in this Main Theme section discussed the mouse model of Pelizaeus-Merzbacher disease, which involves mutations in the proteolipid protein gene;[6] newer magnetic resonance imaging (MRI) techniques (MR spectroscopy, magnetization transfer imaging, diffusion-weighted and diffusion-tensor imaging), which allow detection of microscopic changes in normal appearing brain tissue;[7] and creative healthcare services.[8] Dr. J. Kesselring[9] from Valens, Switzerland, emphasized the beneficial role of rehabilitation in MS and reviewed several studies which showed that physical exercise programs could improve both physiologic and psychologic measures. The final 2 papers focussed on current and future disease-modifying therapies.[10,11] The emphasis on early treatment of MS is increasing, even in the European community. Dr. J. Noseworthy,[11] from Rochester, Minnesota, covered a wide range of new approaches to MS that are under evaluation. He also considered the difficulty of performing blinded placebo-controlled trials in an era of accepted and widely used therapeutics. Drug Therapies The EVIDENCE Study Does the amount and frequency of interferon (IFN) beta-1a dosing affect efficacy? Results of the Evidence for Interferon Dose-effect: European-North American Comparative Efficacy (EVIDENCE) study,[12] a comparative head-to-head trial of 2 interferon beta-1a products (high-dose Rebif, 44 mcg given subcutaneously 3 times a week vs Avonex 30 mcg given intramuscularly once a week), were reported during the Late-Breaking News Section on Friday. This ongoing study involves 56 centers (36 in the US) and 677 relapsing MS patients (443 from the US). The study runs 48 weeks, however, the primary outcome (proportion of relapse-free patients) and main secondary outcome (number of combined unique active T1- and T2-weighted contrast lesions on brain MRI) involved assessment at 24 weeks (6 months). Although patients and treating physicians were not blinded to treatment (this was felt to be impractical), the primary outcome was determined by a blinded evaluating physician, and all MRI readings were blinded. Therefore, both the primary and main secondary outcomes are based on blinded assessments. At 6 months, the proportion of relapse-free patients was 74.9% in the Rebif arm vs 63.3% in the Avonex arm (P = .005), a 32% relative reduction in the proportion of Rebif treated patients with relapses. Patients treated with Rebif had 27% fewer relapses (P = .022), 47% fewer steroid treated relapses (P = .004), and a 37% longer duration to first relapse (P = .001). Combined unique brain MRI lesions averaged 0.8 new lesions per scan in the Rebif-treated group compared with 1.2 new lesions per scan with Avonex (P < .0001). The proportion of active MRI scans was 24% in the Rebif group vs 37.3% in the Avonex group (P < .001). Both drugs were well tolerated. Although the Rebif-treated group had more injection-site reactions and laboratory abnormalities in liver enzymes and white blood cell counts, virtually all of these were mild reactions. This is the largest head-to-head comparison of 2 MS disease-modifying therapies. The study provides convincing evidence that high-dose/frequently dosed IFN beta-1a is superior to low-dose/infrequently dosed IFN beta-1a. Steroids In a small study of approximately 80 patients with relapsing MS, half were treated with regular pulses of intravenous methylprednisolone,[13] and half received steroids only at the time of clinical relapse. MRI was examined at baseline and after 5 years. The group who received regular steroids (total steroid dose about 3.5 times that of the control group) showed less brain atrophy and T1-weighted holes on MRI and less disease progression. There was no effect on T2-weighted lesions or relapses. This is a surprising observation. The investigators suggest that pulse steroids may exert a protective effect to limit atrophy. This hypothesis is consistent with an observation made by National Institutes of Health (NIH) investigators that acute treatment with steroids is associated with less reduction in magnetization transfer ratios within acute lesions. Of course the study arms were fairly small, and only 2 MRI scans were done. This is not as convincing as a study involving frequent MRI scans. Nonetheless, it raises intriguing questions about novel steroid benefits for MS. Other Drugs A small study[14] of 15 MS patients reported that treatment with a potassium-channel blocker 4-aminopyridine 10 mg intramuscularly twice daily for 1 month resulted in improvement in cognitive function. … read more »
