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Diagnostic Criteria *RANT*
From my understanding of the 9 gadzillion websites out there, most reputable like Mayo Clinic and so on, the criteria for being nailed with MS is pretty clear, and requires events separated by time and space.
How in the world then can my neuro say I've got MS when I don't have any MS symptoms, have spots on the brain and brain stem that are in the right places but inactive and haven't changed in number or location in the two MRIs I've had, a very slightly abnormal VEP which could also be explained by an abnormality in the optic nerve I was born with (another medical study said 100% of the disease-free folks with the abnormality I have tested slightly slow in the VEP), and a "great" neurological exam where the difficulties I'm having are from another rare condition that's being treated? And where is this "ruling out of other conditions"? I have another condition that mimics MS, my fricking legs don't work properly because my compartment pressures damaged the flipping nerves, OF COURSE THEY DON'T WORK normally.
WTF is wrong with these people? You are going to ruin my life, ruin my career, and then not do a thing about it because with no symptoms, it's a wait & see approach? Wait for what? So I've got a ticking time bomb in my brain that could explode at any time, render me completely disabled pissing all over myself and/or blind, there are drugs out there that can reduce the chance of this happening, and these docs aren't going to allow the drugs?
I either have the bloody disease and need to get it under control, or I don't. These "guesses" are irresponsible and have severe consequences. Just being labeled ruins lives. And we're supposed to smile and nod, meekly accept a label, attribute every ache and pain to MS as the other docs refuse to treat what could be unrelated issues, then go take drugs for depression?
It's almost like MS is the latest "fad" disease, after ADD, chronic fatigue syndrome, and depression. And the docs seem soo happy to label you with it, like I'm supposed to be grateful I got nailed with a bloody disease and not the real problem, the disease of which I have ZERO symptoms and nothing is going to be done about it?
Sooo, this is sorta a question, if the docs aren't following the criteria, can you get the diagnosis thrown out? Second, feel free to add your rants about incompetent SOBs with MD labels.
How in the world then can my neuro say I've got MS when I don't have any MS symptoms, have spots on the brain and brain stem that are in the right places but inactive and haven't changed in number or location in the two MRIs I've had, a very slightly abnormal VEP which could also be explained by an abnormality in the optic nerve I was born with (another medical study said 100% of the disease-free folks with the abnormality I have tested slightly slow in the VEP), and a "great" neurological exam where the difficulties I'm having are from another rare condition that's being treated? And where is this "ruling out of other conditions"? I have another condition that mimics MS, my fricking legs don't work properly because my compartment pressures damaged the flipping nerves, OF COURSE THEY DON'T WORK normally.
WTF is wrong with these people? You are going to ruin my life, ruin my career, and then not do a thing about it because with no symptoms, it's a wait & see approach? Wait for what? So I've got a ticking time bomb in my brain that could explode at any time, render me completely disabled pissing all over myself and/or blind, there are drugs out there that can reduce the chance of this happening, and these docs aren't going to allow the drugs?
I either have the bloody disease and need to get it under control, or I don't. These "guesses" are irresponsible and have severe consequences. Just being labeled ruins lives. And we're supposed to smile and nod, meekly accept a label, attribute every ache and pain to MS as the other docs refuse to treat what could be unrelated issues, then go take drugs for depression?
It's almost like MS is the latest "fad" disease, after ADD, chronic fatigue syndrome, and depression. And the docs seem soo happy to label you with it, like I'm supposed to be grateful I got nailed with a bloody disease and not the real problem, the disease of which I have ZERO symptoms and nothing is going to be done about it?
Sooo, this is sorta a question, if the docs aren't following the criteria, can you get the diagnosis thrown out? Second, feel free to add your rants about incompetent SOBs with MD labels.
Wow. What a roller coaster.
After the first round of cortisone shots flipped the switch between walking and not walking, I went nearly three months thinking life was good. Then I had an unrelated surgery, put on bed rest, and the pain started. This time the doc did the cortisone shots. Could barely hobble into his office, got the shots, walked with a limp out.
Again was doing fine for a couple of months and back in pain. Another set of shots. Two weeks later, BAM! My ankle rolled while stepping out of an elevator and I ended up on the floor.
I finally gave in and took the despised Neurontin. Some other aches and pains immediately calmed, the leg, not so. The side effects were not worth the minimal relief. Then, I went through every painkiller in my collection (not all at once). No success. Back to the doc's. He finally relented to the surgery and sent me to a neurosurgeon. The neurosurgeon didn't believe I had MS, nor did he think I needed the spinal tap or other things to prove MS. That's two maybe, two "definite no," and one "yes." *SIGH*
He did do the surgery last week. By the evening of the surgery, I could put weight on the leg.
A flipping year struggle to get a needed surgery. . . Hopefully this will solve things, though, and I have a good lead on a doc I just might trust to make the MS/No-MS decisions.
So for all in the battle where you don't think the problem is MS, sometimes it is not. And sometimes folks with that dastardly disease have unrelated problems, too.
After the first round of cortisone shots flipped the switch between walking and not walking, I went nearly three months thinking life was good. Then I had an unrelated surgery, put on bed rest, and the pain started. This time the doc did the cortisone shots. Could barely hobble into his office, got the shots, walked with a limp out.
Again was doing fine for a couple of months and back in pain. Another set of shots. Two weeks later, BAM! My ankle rolled while stepping out of an elevator and I ended up on the floor.
I finally gave in and took the despised Neurontin. Some other aches and pains immediately calmed, the leg, not so. The side effects were not worth the minimal relief. Then, I went through every painkiller in my collection (not all at once). No success. Back to the doc's. He finally relented to the surgery and sent me to a neurosurgeon. The neurosurgeon didn't believe I had MS, nor did he think I needed the spinal tap or other things to prove MS. That's two maybe, two "definite no," and one "yes." *SIGH*
He did do the surgery last week. By the evening of the surgery, I could put weight on the leg.
A flipping year struggle to get a needed surgery. . . Hopefully this will solve things, though, and I have a good lead on a doc I just might trust to make the MS/No-MS decisions.
So for all in the battle where you don't think the problem is MS, sometimes it is not. And sometimes folks with that dastardly disease have unrelated problems, too.
Thanks Shell.
The agency is treating me like I have the disease, despite two of three docs stating it's possible but I don't meet the criteria. So the agency is going to let me sit at home, having already cancelled the disability payments and sick leave, and maybe in a few months they might let me have my job back. I'm out of savings, having spent everything at the docs offices, so I don't know what to do now. If I quit, I'm giving up a 15 year position, but I don't see how I can get another job without losing the first, and one can't get unemployment if still employed. Arrghh!!!
And we want national health care? That's going to be an even worse cluster.
The agency is treating me like I have the disease, despite two of three docs stating it's possible but I don't meet the criteria. So the agency is going to let me sit at home, having already cancelled the disability payments and sick leave, and maybe in a few months they might let me have my job back. I'm out of savings, having spent everything at the docs offices, so I don't know what to do now. If I quit, I'm giving up a 15 year position, but I don't see how I can get another job without losing the first, and one can't get unemployment if still employed. Arrghh!!!
And we want national health care? That's going to be an even worse cluster.
Hi Maria,
I'm glad you popped on and are going back to work.
I'm sorry to hear though that you did not get anything definitive from the Drs. I remember though that that may be best for you where work is concerned.
Please know that we are here for you...
-shell
I'm glad you popped on and are going back to work.
I'm sorry to hear though that you did not get anything definitive from the Drs. I remember though that that may be best for you where work is concerned.
Please know that we are here for you...
-shell
2nd round: oh no, how can one of our doctors be wrong, you don't get to see another neuro.
3rd round: This time with a neuro, retired after 50+ years being in the business, "you are "highly probable" but, not time for DMDs. If something became active, I get symptoms, or I have an attack, then yes & it's definite, but not now.
As one can not be "almost pregnant," I'm going with the "don't have it" and not living my life in fear of MS. Thus the agency can be told where to stick it and let me back to work. The mimicking condition has resolved and I'm tired of sitting at home.
3rd round: This time with a neuro, retired after 50+ years being in the business, "you are "highly probable" but, not time for DMDs. If something became active, I get symptoms, or I have an attack, then yes & it's definite, but not now.
As one can not be "almost pregnant," I'm going with the "don't have it" and not living my life in fear of MS. Thus the agency can be told where to stick it and let me back to work. The mimicking condition has resolved and I'm tired of sitting at home.
Thanks much for the many comments. Keeping one's anger in check is rather difficult, but I know doctors tend to think angry females are suffering from something else, "the poor dear, so emotional, here's a pill," so will be keeping it in check this week.
I am really put off by the "diagnose & dump" of the 2nd opinion neuro and the "OMFG take a bunch of pills" of the 1st. I will be making the eye doc, ortho doc, and the next batch of neuro & gyno docs earn their keeps. The only thing I don't have an "explained by something else" for is the leisons on the brain and brain stem. While one can't unring the bell with some agencies, one can mitigate the impact of docs going off half-cocked. Job & Jonah don't have the patience needed to deal with this.
I am really put off by the "diagnose & dump" of the 2nd opinion neuro and the "OMFG take a bunch of pills" of the 1st. I will be making the eye doc, ortho doc, and the next batch of neuro & gyno docs earn their keeps. The only thing I don't have an "explained by something else" for is the leisons on the brain and brain stem. While one can't unring the bell with some agencies, one can mitigate the impact of docs going off half-cocked. Job & Jonah don't have the patience needed to deal with this.
I'm glad you're doing so well, and that you have such a nice surprise for Davis.
As to your questions, please take some time to read our health pages (upper right). There's a huge amount of info there. A DMD is a disease modifying drug, of which there are currently 4, all injectible. Drugs for MS pain depend entirely on what's causing it---neuropathy, spasticity, trigeminal neuralgia, and so on. A good MS neuro treats all aspects of MS. You are very proactive, so I know you will help your friend be as comfortable as possible.
ess
As to your questions, please take some time to read our health pages (upper right). There's a huge amount of info there. A DMD is a disease modifying drug, of which there are currently 4, all injectible. Drugs for MS pain depend entirely on what's causing it---neuropathy, spasticity, trigeminal neuralgia, and so on. A good MS neuro treats all aspects of MS. You are very proactive, so I know you will help your friend be as comfortable as possible.
ess
I really am trying to qwell my anxiety with Davis and we have gotten to a point where we don't discuss anything about MS over the phone unless it's important. I realized when my mother in law got her dx of Pancreatic cancer that from the moment the dx was made her life became illness. Everyone meant well and wanted information b/c this woman, in her late 60's, had more friends than most teens. SHe and her husband kept up with college alum until the day she died at age 69. For the 2 yrs she suffered, and I do mean suffered, every waking moment and every visit or phone call she recieved was discussing her sickness. She also sat on the sofa in pain from the beginning. I can't tell anyone that she didn't fight b/c, although it may not have apperared she did, I have never experienced the pain she felt of that huge tumor, just under the main nerve in the pancreas. Between pain and pain medication, she merely existed from day to day.
I only went there only to emphasis the point that I am constantly aware not enundating Davis with "MS talk." We have lots of friends on facebook, for example, and he is very leary of joining. I know it's b/c he wants to avoid the constant updates and well-wishes from old friends who mean well but serve as only reminders of what he wishes he could forget.
Therefore, all of my research and even my contacts with all of you, are kept to myself and written in a leather bound journal that's entitled, Davis. I just keep anything I learn in proper order so I have it when and if I need it. I do, however, intend to mention that this diet thing may have been blown totally out of proportion and we might not need to be as restricted as we have been. Another load off....
I am happy to say that I have made arrangements for Davis and me to have a couple of days at a resort in Myrtle Beach just next weekend. He lives there of course, but I made reservations at a resort there, with all the ammenities and bells and whistles for two days. He seems to be looking forward to "pool flopping" for two days and shutting off the cell phone. I have also made arrangements for two of our best friends from grade school, to join us. It's all I can do not to tell Davis as I'm that kid who tells you what your gift is right before you open it;-} He is going to be so insanely surprised and happy to see these two guys and so will I for that matter, Two days of sun and fun with the foursome who haven't been together in 25 years.....
I'm sorry to ramble on....by the way, what is the DMD you mentioned? Also, what pain medications are usually rx'd for MS discomfort. I'd like to know which if any, you all have had the best results with.
My prayers for your healing today,
yvette
I only went there only to emphasis the point that I am constantly aware not enundating Davis with "MS talk." We have lots of friends on facebook, for example, and he is very leary of joining. I know it's b/c he wants to avoid the constant updates and well-wishes from old friends who mean well but serve as only reminders of what he wishes he could forget.
Therefore, all of my research and even my contacts with all of you, are kept to myself and written in a leather bound journal that's entitled, Davis. I just keep anything I learn in proper order so I have it when and if I need it. I do, however, intend to mention that this diet thing may have been blown totally out of proportion and we might not need to be as restricted as we have been. Another load off....
I am happy to say that I have made arrangements for Davis and me to have a couple of days at a resort in Myrtle Beach just next weekend. He lives there of course, but I made reservations at a resort there, with all the ammenities and bells and whistles for two days. He seems to be looking forward to "pool flopping" for two days and shutting off the cell phone. I have also made arrangements for two of our best friends from grade school, to join us. It's all I can do not to tell Davis as I'm that kid who tells you what your gift is right before you open it;-} He is going to be so insanely surprised and happy to see these two guys and so will I for that matter, Two days of sun and fun with the foursome who haven't been together in 25 years.....
I'm sorry to ramble on....by the way, what is the DMD you mentioned? Also, what pain medications are usually rx'd for MS discomfort. I'd like to know which if any, you all have had the best results with.
My prayers for your healing today,
yvette
i will submit this:
the UCLA area has a good neuro. he hasn't dx'd me with MS but has put down, "demyelinating disease of the CNS" and has showed me un-stated dignity and problem solving skills...so far. this, for the first time, after 23 years of physical complaints at eh VA and consistent findings with MS while on active duty 23 years ago. he is working on a dx the last i heard. though some gov places can be sooooooooooooo slow.
so for now, I'll give a thumbs up to this man associated with UCLA.
i've applied at a few agencies too. my chances are slim but i still apply. many ways to still serve my county. i can empathize with you and your concerns and the career ending aspects. this "so called disease" i have as taken a few things away i love to do. i'm still trying to put it all into perspective and keep the anger manageable.
enough about me, i wish you the best and maybe you'll hook up with a good neuro in the UCLA enclave. some really good people on this list too -- seek their help from time to time.
the UCLA area has a good neuro. he hasn't dx'd me with MS but has put down, "demyelinating disease of the CNS" and has showed me un-stated dignity and problem solving skills...so far. this, for the first time, after 23 years of physical complaints at eh VA and consistent findings with MS while on active duty 23 years ago. he is working on a dx the last i heard. though some gov places can be sooooooooooooo slow.
so for now, I'll give a thumbs up to this man associated with UCLA.
i've applied at a few agencies too. my chances are slim but i still apply. many ways to still serve my county. i can empathize with you and your concerns and the career ending aspects. this "so called disease" i have as taken a few things away i love to do. i'm still trying to put it all into perspective and keep the anger manageable.
enough about me, i wish you the best and maybe you'll hook up with a good neuro in the UCLA enclave. some really good people on this list too -- seek their help from time to time.
Actually, repeat MRIs are extremely commonplace. Some MS neuros order them routinely every 6 months or year. Some do this only when it seems symptoms are flaring. Many do some combination. In fact, I don't remember a single instance of a diagnosed person on this forum who does not have repeat MRIs on some basis or other.
Your friend's diagnosis of RR is likely to have been made on past history, not what's happening now. That's good, because then a DMD can be prescribed, and we hope that it will do at least some good. If there never have been remissions from day one, the diagnosis is wrong, and PP is more accurate. But a huge number of RR become SP, and that may be what's going on now. Some repair takes place nevertheless.
As to diet, there is no *scientific* evidence whatever that a particular diet is better than any other in MS. Of course, everyone should have a healthful diet, and it's an excellent idea to fortify that with supplements, including a multivitamin and extra D. These may help, but more importantly they at least do no harn.
If you can, do your best to dial down your anxiety level on behalf of your friend. No matter how far away you are, it will be impossible not to convey some of this in your communications. Your friend needs understanding, prescription help for symptom relief, a DMD if warranted, possibly treatment by a physical therapist, and as stress-free a life as is realistic to establish. Just standing by him through all this is a huge thing. So try to relax a bit. Read up on MS and become your friend's advocate. Help him change neuros if that seems wise. But don't panic. That surely won't help him, and it will take away from your effectiveness.
ess
Your friend's diagnosis of RR is likely to have been made on past history, not what's happening now. That's good, because then a DMD can be prescribed, and we hope that it will do at least some good. If there never have been remissions from day one, the diagnosis is wrong, and PP is more accurate. But a huge number of RR become SP, and that may be what's going on now. Some repair takes place nevertheless.
As to diet, there is no *scientific* evidence whatever that a particular diet is better than any other in MS. Of course, everyone should have a healthful diet, and it's an excellent idea to fortify that with supplements, including a multivitamin and extra D. These may help, but more importantly they at least do no harn.
If you can, do your best to dial down your anxiety level on behalf of your friend. No matter how far away you are, it will be impossible not to convey some of this in your communications. Your friend needs understanding, prescription help for symptom relief, a DMD if warranted, possibly treatment by a physical therapist, and as stress-free a life as is realistic to establish. Just standing by him through all this is a huge thing. So try to relax a bit. Read up on MS and become your friend's advocate. Help him change neuros if that seems wise. But don't panic. That surely won't help him, and it will take away from your effectiveness.
ess
Hi 'Shell,
Let me say thank you infinity for your response.;-}
I wanted to ask you about these active lesions. His MRI was done a few months ago and I was wondering if repeat MRI's are usually done to check for repair, more deterioriation, or those "active" lesions you mentioned. He has not had a second MRI and I am wonder if he should be asking for one?
I am learning a great deal in my strides to help Davis and I appreciate your thoughts on that; however, I am also getting confused in spots as well. For example, I have read that a second or more MRI's are not commonplace, but I can't imagine how a doctor can monitor progress with out one.
Again with his current status. He is labeled R/R but has yet to come to a remission stage. I would like to ask if his being active for so long hinders his capability of actually coming to remission. What I mean is; when a patient is "flaring" for a long period of time, does this bring them to a point of no return? Is it impossible to "go back", so to speak, after one has gotten to a level of weakness or disability? I apologize for anything that may sound "half cocked" but I am feeling an urgency here that if he doesn't get into remission then it may be too late. Don't worry, I am keeping those thoughts to myself so not to worry him needlessly. This is the only positive side of our being 4 hours apart; he can't see me when I'm worried or stressed over new ideas or information.
Also, if anyone has info on a good diet book that I could use, I would greatly appreciate it. I want to ask too, is it really important that he refrain from so many foods in the beginning? We have read no:red meat, eggs, milk, sugar, soy on and on.....but is it THAT altering? I will be as diligent as need be with the diet if the restrictions are so important but if not, WOW, that would take a load off both of us, for sure. ANy ideas are helpful and so greatly appreciated.
Thanks again and may this be a healing day for you,
yvette
Let me say thank you infinity for your response.;-}
I wanted to ask you about these active lesions. His MRI was done a few months ago and I was wondering if repeat MRI's are usually done to check for repair, more deterioriation, or those "active" lesions you mentioned. He has not had a second MRI and I am wonder if he should be asking for one?
I am learning a great deal in my strides to help Davis and I appreciate your thoughts on that; however, I am also getting confused in spots as well. For example, I have read that a second or more MRI's are not commonplace, but I can't imagine how a doctor can monitor progress with out one.
Again with his current status. He is labeled R/R but has yet to come to a remission stage. I would like to ask if his being active for so long hinders his capability of actually coming to remission. What I mean is; when a patient is "flaring" for a long period of time, does this bring them to a point of no return? Is it impossible to "go back", so to speak, after one has gotten to a level of weakness or disability? I apologize for anything that may sound "half cocked" but I am feeling an urgency here that if he doesn't get into remission then it may be too late. Don't worry, I am keeping those thoughts to myself so not to worry him needlessly. This is the only positive side of our being 4 hours apart; he can't see me when I'm worried or stressed over new ideas or information.
Also, if anyone has info on a good diet book that I could use, I would greatly appreciate it. I want to ask too, is it really important that he refrain from so many foods in the beginning? We have read no:red meat, eggs, milk, sugar, soy on and on.....but is it THAT altering? I will be as diligent as need be with the diet if the restrictions are so important but if not, WOW, that would take a load off both of us, for sure. ANy ideas are helpful and so greatly appreciated.
Thanks again and may this be a healing day for you,
yvette
Hi there,
You have learned so very much for your friend, and it's commendable.
My thoughts on the slurred speech and balance issues are that it sound like classic MS and not side affect (rebif) related. Has this been a daily occurrance for Davis since his journey began? And, how long has it been? Asking this because it sounds to me like he is still in a flare. If so, steroids are usually recommended. I wasn't on them for mine, but the literature says that steroids can shorten the flare. It decreases inflammation.
If it's a flare - he may see improvements.
I'm curious to know if Davis had "active" lesions. His MRIs would speak to the reports.
I'm sorry for your fatigue - it's life altering for sure and once you get though helping Davis, hope you are able to take time for yourself.
No outsiders here - all are affected one way or another and we are all connected either by symptom or compassion, etc..
Be well,
shell
You have learned so very much for your friend, and it's commendable.
My thoughts on the slurred speech and balance issues are that it sound like classic MS and not side affect (rebif) related. Has this been a daily occurrance for Davis since his journey began? And, how long has it been? Asking this because it sounds to me like he is still in a flare. If so, steroids are usually recommended. I wasn't on them for mine, but the literature says that steroids can shorten the flare. It decreases inflammation.
If it's a flare - he may see improvements.
I'm curious to know if Davis had "active" lesions. His MRIs would speak to the reports.
I'm sorry for your fatigue - it's life altering for sure and once you get though helping Davis, hope you are able to take time for yourself.
No outsiders here - all are affected one way or another and we are all connected either by symptom or compassion, etc..
Be well,
shell
First of all, it's amazing what you can learn once you humble yourself. In taking a vigilant stance in the MS journey with my friend Davis, I have somehow found patience I didn't have before. I just spent the last hour writing a post only to have it snatched out of thin cyber-air the moment I tried to send it. Last week, I'd have likely thrown my laptop out the nearest window, however, here I sit, albeit, woefully typing a repeat performance of that letter. Did I just learn to not sweat a small thing? hmmmm
Thank you whole heartedly for the informational and kind words posted by so many in just the last 12 hrs. To refresh you, I am not dx'd w/ MS myself, I am on this information warpath for my friend Davis. He is 39 and dx'd about 5 months ago with r/r MS. He has been on Rebif for 4 months now.
I want to thank Quix in informing me that the Rebix side fx are not doing irrepairable damage and IF his dx is inaccurate, as I feel it is, then he won't be on a liver transplant list in the end. I was insanely anxious to get his new appt moved up b/c I feared the shots, if he is MS negative, were ravaging his liver. Thank you. whew.
Secondly, I am a bit disheartened to learn that the LP isn't a necessary diagnostic test anymore, as I held hope that was one of the more conclusive tests. *frowns* However, he has NOT seen and endocronologist so they have no way of ruling out thyroid issues either. (or is that adrenals? Sorry, I'm learning daily) Let me digress by saying that Davis presented with rt leg weakness that he has noticed for maybe 5 yrs. He finally sought medical attn b/c of extreme pain in his feet and his toes. The MS dx came after MRI testing. He did not have an LP. He did have a test involving electrical currents.....(?)
Back to the Rebif...Davis shows significant symptoms after taking the shot. His speech is slurred and his balance is terribly off. He feels aweful which I know is b/c of the flu like symptoms that are common. Thank you also Quix for clearing up the myth that the Rebif is cytotoxic...I learned that also...Are the exacerbated symptoms common with the Rebif? If so, do they lessen over time? The person with whom he speaks (who I have found out is with the RX company for Rebif. ugh!) has told him to just increase his water intake. What? That seems a little over simplifying for such miserable symptoms.
As you may tell, I am the one in denial here. Davis has fully accepted his dx of MS and that just breaks my heart. After the hours of research I have done and the myriad of other illnesses that share MS symptoms, I am just not giving up yet for another dx....
However, until that call comes that he's made the cancellation spot on the list, or until 10 June, for his appt. I am dealing with what is at hand...I cook for a living (wedding cakes but still no stranger to the kitchen) and I am having an aweful time getting my brain around this incredibly restrictive diet. Everyone online seems to want to sell a book and the info is scattered and contradictory at best. I am cooking items that he can freeze and make easily and bringing them to my visits each week, but I'm running out of options here.(he is in Myrtle Beach SC and I, in Charlotte NC where his specialist appt is 10 June. We are 4 hours in distance) Is there a book that is actually concise and accurate?
As for the mention I made of Provigil, Quix. I do walk in your shoes...well, maybe in like one flip flop;-} I went thru the battery of auto-immune testing for the past 2 yrs and have been dx'd w. fibro/chronic fatique....The latter is a miserable condition and for that I take Provigil. I only mentioned it b/c I happen to know how xpensive it is. I am rx'd for 200mg 2x daily and I have recently begun taking 2 in the am and usually a third later in the day. My sleepiness is overwhelming even after coffee and sodas. By then I am terribly jittery but my head feels like it's crammed with sand. Horrible analogy but I feel, all day, like I have hit the ground running the moment my eyes open, w/o taking time to fully wake up. People tell me to take a nap or go to bed earlier....oh, the best one is....how can you be tired, you haven't done anything? aarrggghhhh! It's miserable and it's impossible to push yourself through at times. I have this but I am lucky to have ONLY this. Those with MS have this plus.....and my empathy/sympathy grows for each of you daily.
Enough of me....I have some personal issues to take up with my own PCP after Davis finds remission.
In order to help him, I have been diligently searching the internet for answers and I have to tell you all what a wonderful network you have here. For once, I feel like I'm not boring my friends or rambling on about the same thing day in and out. This is a persons life here and those same people who are supposed to be mutual friends are belittling me for becoming "obsessed" as they call it. Well, I just give them a sweet smile and tell them that I was looking for a reason not to go to the gym anyway......
Another issue is likely trivial but I will ask anyway. Davis is 6'5 and well over 200lbs. He was a football player in hs and college and has stayed in great shape all these years. Is it possible that his balance issues are compounded by his height/weight? Are those pts who are taller/heavier more prone to have the lower extremity pain/coordination issues than those who may be shorter/lighter? Not that it matters, I'm just wondering about the foot pain and balance.
Thank you all again for including me even though I am an outsider in MS. I'll assure you that my heart is MS ravaged and will be, from here on, until there is a cure...No, a vaccine.
I think of you all daily and keep you in my prayers.
Sincerely,
yvette (avasmom)
Thank you whole heartedly for the informational and kind words posted by so many in just the last 12 hrs. To refresh you, I am not dx'd w/ MS myself, I am on this information warpath for my friend Davis. He is 39 and dx'd about 5 months ago with r/r MS. He has been on Rebif for 4 months now.
I want to thank Quix in informing me that the Rebix side fx are not doing irrepairable damage and IF his dx is inaccurate, as I feel it is, then he won't be on a liver transplant list in the end. I was insanely anxious to get his new appt moved up b/c I feared the shots, if he is MS negative, were ravaging his liver. Thank you. whew.
Secondly, I am a bit disheartened to learn that the LP isn't a necessary diagnostic test anymore, as I held hope that was one of the more conclusive tests. *frowns* However, he has NOT seen and endocronologist so they have no way of ruling out thyroid issues either. (or is that adrenals? Sorry, I'm learning daily) Let me digress by saying that Davis presented with rt leg weakness that he has noticed for maybe 5 yrs. He finally sought medical attn b/c of extreme pain in his feet and his toes. The MS dx came after MRI testing. He did not have an LP. He did have a test involving electrical currents.....(?)
Back to the Rebif...Davis shows significant symptoms after taking the shot. His speech is slurred and his balance is terribly off. He feels aweful which I know is b/c of the flu like symptoms that are common. Thank you also Quix for clearing up the myth that the Rebif is cytotoxic...I learned that also...Are the exacerbated symptoms common with the Rebif? If so, do they lessen over time? The person with whom he speaks (who I have found out is with the RX company for Rebif. ugh!) has told him to just increase his water intake. What? That seems a little over simplifying for such miserable symptoms.
As you may tell, I am the one in denial here. Davis has fully accepted his dx of MS and that just breaks my heart. After the hours of research I have done and the myriad of other illnesses that share MS symptoms, I am just not giving up yet for another dx....
However, until that call comes that he's made the cancellation spot on the list, or until 10 June, for his appt. I am dealing with what is at hand...I cook for a living (wedding cakes but still no stranger to the kitchen) and I am having an aweful time getting my brain around this incredibly restrictive diet. Everyone online seems to want to sell a book and the info is scattered and contradictory at best. I am cooking items that he can freeze and make easily and bringing them to my visits each week, but I'm running out of options here.(he is in Myrtle Beach SC and I, in Charlotte NC where his specialist appt is 10 June. We are 4 hours in distance) Is there a book that is actually concise and accurate?
As for the mention I made of Provigil, Quix. I do walk in your shoes...well, maybe in like one flip flop;-} I went thru the battery of auto-immune testing for the past 2 yrs and have been dx'd w. fibro/chronic fatique....The latter is a miserable condition and for that I take Provigil. I only mentioned it b/c I happen to know how xpensive it is. I am rx'd for 200mg 2x daily and I have recently begun taking 2 in the am and usually a third later in the day. My sleepiness is overwhelming even after coffee and sodas. By then I am terribly jittery but my head feels like it's crammed with sand. Horrible analogy but I feel, all day, like I have hit the ground running the moment my eyes open, w/o taking time to fully wake up. People tell me to take a nap or go to bed earlier....oh, the best one is....how can you be tired, you haven't done anything? aarrggghhhh! It's miserable and it's impossible to push yourself through at times. I have this but I am lucky to have ONLY this. Those with MS have this plus.....and my empathy/sympathy grows for each of you daily.
Enough of me....I have some personal issues to take up with my own PCP after Davis finds remission.
In order to help him, I have been diligently searching the internet for answers and I have to tell you all what a wonderful network you have here. For once, I feel like I'm not boring my friends or rambling on about the same thing day in and out. This is a persons life here and those same people who are supposed to be mutual friends are belittling me for becoming "obsessed" as they call it. Well, I just give them a sweet smile and tell them that I was looking for a reason not to go to the gym anyway......
Another issue is likely trivial but I will ask anyway. Davis is 6'5 and well over 200lbs. He was a football player in hs and college and has stayed in great shape all these years. Is it possible that his balance issues are compounded by his height/weight? Are those pts who are taller/heavier more prone to have the lower extremity pain/coordination issues than those who may be shorter/lighter? Not that it matters, I'm just wondering about the foot pain and balance.
Thank you all again for including me even though I am an outsider in MS. I'll assure you that my heart is MS ravaged and will be, from here on, until there is a cure...No, a vaccine.
I think of you all daily and keep you in my prayers.
Sincerely,
yvette (avasmom)
I know, I used to live in California and actually did my postdoc at UCSF--a busy busy place with some good points and some bad ones, depending on what you're needing (for example, I wouldn't go there for "female" anything, ever, after my experiences with various aspects of that). I was just thinking "clinics." Plus, I'm from Texas. Driving--or flying--500 miles doesn't seem like that big of a deal around here. ;-)
Bio
Bio
San Francisco is 500 miles from LA. But, it is a great medical center. We have had both good and bad reports from people who have gone there, but that is true with almost every place, it seems.
I think someone on here has gone to the UCSF clinic and emerged with a good report. Was it "Melissa"? Sorry...I don't remember things so well.
Bio
Bio
I see your point about the stigma being a "death knell" for certain careers. That is what I thought you meant and I am so sorry for that happening. No wonder you are angry - besides the other carp.
You clearly have a view of the spectrum of MS.
I hope you saw that I did understand your anger and outrage at medically sloppy thinking.
As USC and UCLA are my medical alma maters I wish I could point you to the top good people, but I am too long gone to know. I looked up both of the MS Centers and the one at UCLA appears to be the most comprehensive. Beyond that, and one enthusiastic recommendation at the "msneuroratings" site for a UCLA doc, I don't have an educated opinion.
I'm glad you joined us.
Quix
You clearly have a view of the spectrum of MS.
I hope you saw that I did understand your anger and outrage at medically sloppy thinking.
As USC and UCLA are my medical alma maters I wish I could point you to the top good people, but I am too long gone to know. I looked up both of the MS Centers and the one at UCLA appears to be the most comprehensive. Beyond that, and one enthusiastic recommendation at the "msneuroratings" site for a UCLA doc, I don't have an educated opinion.
I'm glad you joined us.
Quix
Thanks much. The perceptions of Mayo are really appreciated. I need to find someone, which between UCLA & USC there oughta be someone that has an idea about MS, for a third opinion.
And oh yeah, this diagnosis puts an end to the career path I was following. You can not do government contract work for which travel is required with an MS diagnosis, no matter how inactive or "benign". Those that are already "in" are usually grandfathered or medically retired, but if you are not already "in", so sorry. Several other fields that were my secondary choices are also closed now. If I am *really* *really* *really* lucky, I might get an exemption from one requirement and be #26 out of thousands with that waiver, to have one job left in this field. Otherwise, after spending 20 years pursuing it, the door has slammed in my face.
I'm leaving the field, the doc's offices, and other things unnamed as I don't need to be identified. There is a very negative stigma associated with MS in this field, thus the career ending aspect, plus there is a chance that someone that knows what the fark they are doing will reverse the diagnosis. Of course certain agencies will then make up their own minds on if they'll accept that reversal.
My comments about ADD, CFS, and depression come from the last 20 years of experience. When doctors don't know what to do, they come up with those labels, along with hysteria, fibromyalgia, GERD, and so on. Sure, there are legitimate cases that do need treatment for all of those conditions, but when the diagnostic criteria is skipped and the doc just writes a prescription, or the patient comes in and demands the drug they saw on TV, that's a fad disease. As far as MS goes, I have three cousins, not directly related, that have MS. One is in a nursing home without bladder or bowel control, one is running marathons, and the third passed on after an attack shut down major organs (primary progressive?).
And oh yeah, this diagnosis puts an end to the career path I was following. You can not do government contract work for which travel is required with an MS diagnosis, no matter how inactive or "benign". Those that are already "in" are usually grandfathered or medically retired, but if you are not already "in", so sorry. Several other fields that were my secondary choices are also closed now. If I am *really* *really* *really* lucky, I might get an exemption from one requirement and be #26 out of thousands with that waiver, to have one job left in this field. Otherwise, after spending 20 years pursuing it, the door has slammed in my face.
I'm leaving the field, the doc's offices, and other things unnamed as I don't need to be identified. There is a very negative stigma associated with MS in this field, thus the career ending aspect, plus there is a chance that someone that knows what the fark they are doing will reverse the diagnosis. Of course certain agencies will then make up their own minds on if they'll accept that reversal.
My comments about ADD, CFS, and depression come from the last 20 years of experience. When doctors don't know what to do, they come up with those labels, along with hysteria, fibromyalgia, GERD, and so on. Sure, there are legitimate cases that do need treatment for all of those conditions, but when the diagnostic criteria is skipped and the doc just writes a prescription, or the patient comes in and demands the drug they saw on TV, that's a fad disease. As far as MS goes, I have three cousins, not directly related, that have MS. One is in a nursing home without bladder or bowel control, one is running marathons, and the third passed on after an attack shut down major organs (primary progressive?).
Hi, Your friend has a goldmine in a friend as concerned as you. Though I disagree that MS had become like a fad diagnosis, I do know that some doctors may jump to it far too early and irresponsibly.
An LP is not required in the diagnosis of MS. In fact, it is falling from favor as a routine test all over the world, especially Europe. If the diagnosis of MS can be made without it, then it is usually not done. If the LP is done and it is negative, it DOES NOT negate the diagnosis. It is only helpful when it has positive results.
As for the Rebif - the likelihood of liver damage is small. Your friend does seem to be having the "flu-like side effects" that are so common with the Interferon-beta-1a meds. These do no lingering harm physically. You didn't say how long your friend has been using the Rebif, but those side effects usually lessen, by a great deal, months into the therapy. It is not uncommon for a person to need to change the MS med because of side effects. But, please understand that these side effects are not dangerous - they can, though destroy the quality of life and that is unacceptable also.
Something your friend should know is that Rebif (and it's cousins) are NOT like chemotherapy in the cytotoxic (cell-killing) effects that chemo has. Not at all. Interferon-beta is produced in the body as part of the immune system's defense against (usually) viral infections such as influenza. Those "flu-like" symptoms you get when you actually have the flu are caused by the increased production of Interferon-beta in the body. The are reproduced when it is used in Rebif or the other interferon meds. The immune system is not being suppressed, but rather one part of it is being enhanced - modulated.
Whether your friend should continue Rebif is something between them and their neuro. If the symptoms are disabling, then the doctor needs to know this, because then the treatment is much worse than the disease and perhaps he would do better on another , such as Copaxone which does not have those side effects . If there is worry about liver damage then your friend's PCP can do regular chem panels to check for early signs. If your friend shares your mistrust of the diagnosis, then he/she must decide if following the current treatment is what they want to do.
I would suggest that you be careful about making sweeping generalizations about people, doctors and meds (or anything, for that matter). Such generalizations are often more false than they are true and they speak to a poorly thought out belief system. Also, be more careful with your facts. Provigil is NOT just a narcolepsy med. It is also approved for Shift-Work Fatigue (a disorder far more common than narcolepsy) and is accepted within the MS community as the best med we have available for the incapacitating fatigue of MS. Your view of all of this seems as narrow-minded on your part as your claim that it is all greed-based on the part of medicine and Big Pharmaceuticals. Clearly you have never suffered totally crushing fatigue. ....Walk a mile in our shoes...
Quix
An LP is not required in the diagnosis of MS. In fact, it is falling from favor as a routine test all over the world, especially Europe. If the diagnosis of MS can be made without it, then it is usually not done. If the LP is done and it is negative, it DOES NOT negate the diagnosis. It is only helpful when it has positive results.
As for the Rebif - the likelihood of liver damage is small. Your friend does seem to be having the "flu-like side effects" that are so common with the Interferon-beta-1a meds. These do no lingering harm physically. You didn't say how long your friend has been using the Rebif, but those side effects usually lessen, by a great deal, months into the therapy. It is not uncommon for a person to need to change the MS med because of side effects. But, please understand that these side effects are not dangerous - they can, though destroy the quality of life and that is unacceptable also.
Something your friend should know is that Rebif (and it's cousins) are NOT like chemotherapy in the cytotoxic (cell-killing) effects that chemo has. Not at all. Interferon-beta is produced in the body as part of the immune system's defense against (usually) viral infections such as influenza. Those "flu-like" symptoms you get when you actually have the flu are caused by the increased production of Interferon-beta in the body. The are reproduced when it is used in Rebif or the other interferon meds. The immune system is not being suppressed, but rather one part of it is being enhanced - modulated.
Whether your friend should continue Rebif is something between them and their neuro. If the symptoms are disabling, then the doctor needs to know this, because then the treatment is much worse than the disease and perhaps he would do better on another , such as Copaxone which does not have those side effects . If there is worry about liver damage then your friend's PCP can do regular chem panels to check for early signs. If your friend shares your mistrust of the diagnosis, then he/she must decide if following the current treatment is what they want to do.
I would suggest that you be careful about making sweeping generalizations about people, doctors and meds (or anything, for that matter). Such generalizations are often more false than they are true and they speak to a poorly thought out belief system. Also, be more careful with your facts. Provigil is NOT just a narcolepsy med. It is also approved for Shift-Work Fatigue (a disorder far more common than narcolepsy) and is accepted within the MS community as the best med we have available for the incapacitating fatigue of MS. Your view of all of this seems as narrow-minded on your part as your claim that it is all greed-based on the part of medicine and Big Pharmaceuticals. Clearly you have never suffered totally crushing fatigue. ....Walk a mile in our shoes...
Quix
I didn't intend to disrespect anyone, either, and I will always take the opportunity to debunk perceptions about the reality of certain disorders that are personal to me. Maria sounds like someone with a VERY complex case history who would benefit, as Quix and others have said, from more expert opinions. And I suggested the Health Pages because they do a great job of streamlining and clarifying so much of the overwhelming information one can find at Google U.
Cheers-
Bio
Cheers-
Bio
Ava's Mom - Wow, what a discussion and one that brings up a lot of interesting topics in the diagnosis of MS. First, Welcome to the forum. I'm going to answer your post directly, even though a lot of others have also done this and have said much the same things that I will say.
I also heard a couple different rants in your post.
The first was how can you be diagnosed when you don't in any way meet McDonald's Criteria?
The reality of MS is that there is a large number of people with MS who don't meet the Criteria. In the hands of an astute neurologist the diagnosis can be made outside the Criteria. HOWEVER, there are certain parts to the disease which really are needed, and you have mentioned those. These are clinical symptoms and physical signs (abnormalities on neuro exam) that show that the disease is advancing in both time and space. Granted some of the evidence can come come from the MRIs. Along with that there is the need for "there to be NO OTHER BETTER EXPLANATION. You feel that you do have an explanation for the couple of abnormalities they are claiming: You have a congenital eye disorder that can skew the VEP and a problem with fascial compartments that can damage the nerves (I assume, through pressure). It is not clear if your doctors have done the "Rule out of other diseases (mimics) through the necessary blood tests.
So, in your mind, other than the MRI lesions, you have good explanations for any signs and symptoms. Given that you have the two pre-existing conditions of the eyes and the leg compartments, it sounds like your doctors are missing any evidence that the disease is advancing in time, right? Your MRIs are static. How long have they been static for? That the MRIs are static does not disprove MS. MS can have stable lesions on MRI for years, even without therapy.
So, at worst you might have MS, in which the signs and symptoms have not yet shown up or in which some of the signs are being muddied with the possibility that they are being caused by prior conditions.
In your mind, the doctors' thinking seems to be sloppy and outside the current Diagnostic Guidelines. From what you said, I don't disagree with you.
Your second rant is Why do these doctors who have made this diagnosis of MS, now want to just wait and see if you will get worse?
I am in total agreement with you. If the diagnosis is made (as opposed to suspected) then it is stupid not to want to begin treatment. All the current knowledge is that MS is a disease that is best treated AS EARLY AS POSSIBLE. The meds work best the earlier they are used.
A third rant I heard in passing was: That just the diagnosis of MS would ruin your life and your career.
I was puzzled by this. Did you mean that the mere "diagnosis" of MS (perhaps by its stigma) would ruin your life and your career? Because the disease itself, usually does not, though it can. Most people continue to work and raise faimilies - enjoying life with the occasional "bump" in the road.
Finally, the whole thing seems to be summed up as, "You don't believe the doctors' are correct in their assessment that you have MS. AND, IF you do, then why the frak are they not treating it as the pervailing wisdom demands?
With these kinds of doubts, you certainly need a second and probably a third opinion on your status. This should probably be at a place that is known for quality diagnosis and care, like we have found with a few of our members at NYU with Dr. Herbert.
As a few people commented, your first problem - that of the doctors flying to the diagnosis of MS in light of very flimsy evidence, is exactly opposite to what we usually find here. Many of us have suffered and fulfilled McDonald's Criteria, only to have our neurologists afraid to commit themselves or too arrogant to admit that we are not just hysterical over a few symptoms.
You mentioned the Mayo. This is a place that we have been repeatedly (though not universally) unhappy with as they are the great proponents of the "Wait and See" approach after a diagnosis of what appears to be a mild course of MS.
Finally, I have to say that the diagnosis of MS is often not clearcut and thus, the doctors have to make their best educated guess. It's just that some doctors are better at the fuzzy side of diagnosis than others.
I think you need to bring in some other good medical minds (opinions) here.
Welcome again. I am the local medical person here, a physician with MS who was not a neurologist, but I try very hard to understand the problems on the subject.
I hope we have helped.
Quix
I also heard a couple different rants in your post.
The first was how can you be diagnosed when you don't in any way meet McDonald's Criteria?
The reality of MS is that there is a large number of people with MS who don't meet the Criteria. In the hands of an astute neurologist the diagnosis can be made outside the Criteria. HOWEVER, there are certain parts to the disease which really are needed, and you have mentioned those. These are clinical symptoms and physical signs (abnormalities on neuro exam) that show that the disease is advancing in both time and space. Granted some of the evidence can come come from the MRIs. Along with that there is the need for "there to be NO OTHER BETTER EXPLANATION. You feel that you do have an explanation for the couple of abnormalities they are claiming: You have a congenital eye disorder that can skew the VEP and a problem with fascial compartments that can damage the nerves (I assume, through pressure). It is not clear if your doctors have done the "Rule out of other diseases (mimics) through the necessary blood tests.
So, in your mind, other than the MRI lesions, you have good explanations for any signs and symptoms. Given that you have the two pre-existing conditions of the eyes and the leg compartments, it sounds like your doctors are missing any evidence that the disease is advancing in time, right? Your MRIs are static. How long have they been static for? That the MRIs are static does not disprove MS. MS can have stable lesions on MRI for years, even without therapy.
So, at worst you might have MS, in which the signs and symptoms have not yet shown up or in which some of the signs are being muddied with the possibility that they are being caused by prior conditions.
In your mind, the doctors' thinking seems to be sloppy and outside the current Diagnostic Guidelines. From what you said, I don't disagree with you.
Your second rant is Why do these doctors who have made this diagnosis of MS, now want to just wait and see if you will get worse?
I am in total agreement with you. If the diagnosis is made (as opposed to suspected) then it is stupid not to want to begin treatment. All the current knowledge is that MS is a disease that is best treated AS EARLY AS POSSIBLE. The meds work best the earlier they are used.
A third rant I heard in passing was: That just the diagnosis of MS would ruin your life and your career.
I was puzzled by this. Did you mean that the mere "diagnosis" of MS (perhaps by its stigma) would ruin your life and your career? Because the disease itself, usually does not, though it can. Most people continue to work and raise faimilies - enjoying life with the occasional "bump" in the road.
Finally, the whole thing seems to be summed up as, "You don't believe the doctors' are correct in their assessment that you have MS. AND, IF you do, then why the frak are they not treating it as the pervailing wisdom demands?
With these kinds of doubts, you certainly need a second and probably a third opinion on your status. This should probably be at a place that is known for quality diagnosis and care, like we have found with a few of our members at NYU with Dr. Herbert.
As a few people commented, your first problem - that of the doctors flying to the diagnosis of MS in light of very flimsy evidence, is exactly opposite to what we usually find here. Many of us have suffered and fulfilled McDonald's Criteria, only to have our neurologists afraid to commit themselves or too arrogant to admit that we are not just hysterical over a few symptoms.
You mentioned the Mayo. This is a place that we have been repeatedly (though not universally) unhappy with as they are the great proponents of the "Wait and See" approach after a diagnosis of what appears to be a mild course of MS.
Finally, I have to say that the diagnosis of MS is often not clearcut and thus, the doctors have to make their best educated guess. It's just that some doctors are better at the fuzzy side of diagnosis than others.
I think you need to bring in some other good medical minds (opinions) here.
Welcome again. I am the local medical person here, a physician with MS who was not a neurologist, but I try very hard to understand the problems on the subject.
I hope we have helped.
Quix
Hi Marie - Me again. Please know by no means was it my intent to disrespect you as was insinuated above - I care too much about the disease and the people it affects to do something like that - hope you know that.
Avasmama - I don't believe Maria was insulting anyone here - just a vent or rant as she indicated and looking for input. I'm an open book with my experience and simply shared my denial and what I've learned. I'm on Rebif if you'd like more information for your friend.
Avasmama - I don't believe Maria was insulting anyone here - just a vent or rant as she indicated and looking for input. I'm an open book with my experience and simply shared my denial and what I've learned. I'm on Rebif if you'd like more information for your friend.
It is likely true that more people are dx with a disease when there are drugs available to treat it. This is likely due to both doctor and pt (and drug companies, but actually, I'd argue that that is more indirect).
If as a dr you *think* that a pt might have a disease, but there's not much you can do to treat it, you might refrain from giving that dx, because you think it could somehow make them worse off (work limitations, psychologically, etc.). But if the dr has a treatment, then the instinct is to go ahead and treat, especially if you think the benefits outweigh the risks. But often in order to treat, you need to dx. This is certainly the case with ms, because most insurance companies would put up a big fuss about paying for DMD if there isn't a dx of MS.
If you're a pt and your sx are bothersome, but you can live with them, and there's no treatment available, you're less likely to pursue a dx. If on the other hand, a treatment (DMD in this case) is available, most people would be more inclined to seek a dx in order to see if the treatment might help them, or at least slow the progression of their sx. This isn't people thinking it's a fad disease that they want to jump on the bandwagon for, it's just that they want to be able to treat what they have.
The way I see drug companies coming into this is through advertising. They make people (pts and drs) aware of the treatments that are available and whom they might help. Is this bad? It depends on how truthful drug companies are being (how much can they help? who do they help? for what specific sx or diseases?)--this is where regulation comes in, because left to their own devices drug companies would likely overstate the effectiveness of their drugs. But overall, I think it's good that both drs and pts know of treatments. Especially for problems that pts might be hesitant to voice to their drs (an unrelated on, ED, comes to mind...)
Just my thoughts.
Stephanie
If as a dr you *think* that a pt might have a disease, but there's not much you can do to treat it, you might refrain from giving that dx, because you think it could somehow make them worse off (work limitations, psychologically, etc.). But if the dr has a treatment, then the instinct is to go ahead and treat, especially if you think the benefits outweigh the risks. But often in order to treat, you need to dx. This is certainly the case with ms, because most insurance companies would put up a big fuss about paying for DMD if there isn't a dx of MS.
If you're a pt and your sx are bothersome, but you can live with them, and there's no treatment available, you're less likely to pursue a dx. If on the other hand, a treatment (DMD in this case) is available, most people would be more inclined to seek a dx in order to see if the treatment might help them, or at least slow the progression of their sx. This isn't people thinking it's a fad disease that they want to jump on the bandwagon for, it's just that they want to be able to treat what they have.
The way I see drug companies coming into this is through advertising. They make people (pts and drs) aware of the treatments that are available and whom they might help. Is this bad? It depends on how truthful drug companies are being (how much can they help? who do they help? for what specific sx or diseases?)--this is where regulation comes in, because left to their own devices drug companies would likely overstate the effectiveness of their drugs. But overall, I think it's good that both drs and pts know of treatments. Especially for problems that pts might be hesitant to voice to their drs (an unrelated on, ED, comes to mind...)
Just my thoughts.
Stephanie
First let me welcome you here and tell you how sorry I am that you have joined the ranks of those of us with MS. Yes, it can be a MiSerable disease, and feel like a blight on your records.
Since you are so sure that you don't have MS, please seek a second opinion immediately. I am a strong believer in instinct and if it doesn't feel right to you, it might well not be.
If it comes back that you definitely do have MS, then I would be having your tantrum with the doctors - tell them if you are dx'd, even with CIS (Clinically Isolated Syndrome) you need to be on a DMD now and not later.
Its a **** shoot waiting to see if something might happen to set of the "ticking time bomb in my brain that could explode at any time, render me completely disabled pissing all over myself and/or blind" as you so eloquently wrote. That's a gamble that you don't want to be on the losing side of if it happens.
BTW, MS patients don't go blind; it is anatomically impossible to **** all over ourselves (I don't think even the men can do that!) but we do dribble down our legs sometimes; and despite having MS none of my companions have had to clean up exploded brain matter off the walls. :-) My point is that for most of us, having MS is no where near as dramatic as you might think from the images. In fact, that majority of MS patients continue to walk on their own power, take care of themselves, and function efficiently at jobs and family life.
Please take the time to look at our health pages - they contain some of the most accurate information on the WWW. Come back and keep us posted on how you proceed with the 2nd opinion.
Wishing you the best,
Lulu
PS - just curious, were you dx'd by Mayo?
Since you are so sure that you don't have MS, please seek a second opinion immediately. I am a strong believer in instinct and if it doesn't feel right to you, it might well not be.
If it comes back that you definitely do have MS, then I would be having your tantrum with the doctors - tell them if you are dx'd, even with CIS (Clinically Isolated Syndrome) you need to be on a DMD now and not later.
Its a **** shoot waiting to see if something might happen to set of the "ticking time bomb in my brain that could explode at any time, render me completely disabled pissing all over myself and/or blind" as you so eloquently wrote. That's a gamble that you don't want to be on the losing side of if it happens.
BTW, MS patients don't go blind; it is anatomically impossible to **** all over ourselves (I don't think even the men can do that!) but we do dribble down our legs sometimes; and despite having MS none of my companions have had to clean up exploded brain matter off the walls. :-) My point is that for most of us, having MS is no where near as dramatic as you might think from the images. In fact, that majority of MS patients continue to walk on their own power, take care of themselves, and function efficiently at jobs and family life.
Please take the time to look at our health pages - they contain some of the most accurate information on the WWW. Come back and keep us posted on how you proceed with the 2nd opinion.
Wishing you the best,
Lulu
PS - just curious, were you dx'd by Mayo?
Welcome - If you can do us a favor and post your questions in a separate thread so they are sure the get the attention they deserve, that would be great. Lots of times people don't read all the responses to the initial question and I'm afraid you won't get the answers you need.
Be well,
Lulu
Be well,
Lulu
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