This may sound harsh

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This may sound harsh

Postby jerrygallow » Sat Nov 30, 2013 4:57 pm

And maybe I'm off base. But I've noticed something lately. I receive updates from several ms Facebook pages. I frequently see posts from people seeking a ms diagnosis sometimes they say for 10 or 20 years. People will say things like how do I get a diagnosis or how do I convince the dr I have MS? Now this bugs me. It actually offends me.

When I was diagnosed there was no denying the symptoms. I couldn't see fingers in front of my face. When I was diagnosed I tried talking my dr out of it. I said maybe we can test for something else. He chuckled and said I usually have patients trying to convince me that they do have ms when they don't. Why would you want a diagnosis like this if it weren't clear that you had the condition. I don't like it when people use their condition like a badge of honor. I have sold things on craigslist before and people will say they want it for less because they are on disability. Or they will ask me for free legal representation and use that line for sympathy. I think to myself I too am disabled but I don't tell people. Why would you want pity. My sister is an ER nurse and tells me about the people who go to the hospital just for attention or to get pain meds. If you want your complaint to be dismissed by the way just tell them you have fibromyalgia. They never take that seriously. But the bottom line I guess is if your symptoms are not bad enough that a doctor can easily recognize them as MS, as someone whose life has been dramatically changed by this condition, i'm a little offended that people use it just to help get extra pity. Maybe you guys can tell me how insensitive I am
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Re: This may sound harsh

Postby Lainie » Sat Nov 30, 2013 8:22 pm

I don't think you are insensitive. From the inside of MS looking out it is difficult to understand why some would 'want' MS. I think the people you see saying this are people who have a host of ambiguous symptoms, everyone around them thinks they are crazy, and they have convinced themselves that they have MS and just want a diagnosis so they can get on with their lives without feeling nuts.
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Re: This may sound harsh

Postby want2bike » Sun Dec 01, 2013 8:02 am

Many people are sick today and they are looking for a name to put on their disease. People have been conditioned to think there is a magic pill which will make them feel better. All they need is a diagnoses of the disease. Once you put a name on the disease you have access to all the poisonous drugs. People want a quick fix. They do not want to change what gave them the disease. It is about how we have been trained.
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Re: This may sound harsh

Postby erinc14 » Sun Dec 01, 2013 10:39 am

sometimes when I smile or tell a joke I've had people say "you're so good humored . I know I couldn't take it ." like it's a choice . :?
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Re: This may sound harsh

Postby CaliReader » Mon Dec 02, 2013 11:30 am

I guess I have some sympathy.
I had the opposite experience from yours. I have MS. It's clear from both symptoms and mri results. My most recent flare immobilized part of my right leg. And, I'm not like the person in your example. I didn't suspect MS until I had mri results and started googling brain lesions.

But, I can sympathize with the desire for an early diagnosis. I'm in my mid 40's. Looking back, I had symptoms, spasticity, heat sensitivity that made my vision go blurry, dizzyness, intermittent incontinence going back 20 years. My ms did a slow burn and I had no knowledge. An early diagnosis would have benefitted me in planning my life and career. It would have solved a sense of confusion and not knowing what was wrong that I lived with but knowing something was.

When my symptoms heated up pre diagnosis, I had a relatively short period of total confusion and fear. Doctors were telling me it was depression. I was referred to a psychiatrist, despite what was clearly neuropathic pain. The neurologist was very surprised when my results came back positive.

Knowing something is seriously wrong and having doctors tell you it is nothing is a miserable experience. Even for those who don't actually have ms. A diagnosis brings clarity at least.
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Re: This may sound harsh

Postby jerrygallow » Mon Dec 02, 2013 1:34 pm

I understand what you are saying. I have no issue with people who are legitimately sick. What I don't like is someone with a headache, some generalized fatigue or pain trying to get the MS label. This thing is far more serious than "I don't feel well and need a sympathy play at work" If you have MS you will very likely have brain or spine lesions. If you have flair ups, neurological deficits and lesions, maybe even a positive spinal tap, then a neuro should have no trouble saying this is MS. If you don't, you likely don't have MS.

Further, having a diagnosis doesn't do much besides make you uninsurable. An MS diagnosis is nothing more than a doctor's opinion, since it's a clinical diagnosis. You look at the symptoms and then guess whether they are strong enough to warrant a name.

Then there's the issue getting a diagnosis out of a doctor. I went to several doctors, even one who prescribed rebif, and yet nobody told me that I had MS. Docs don't like to give a diagnosis for liability--also I'm sure it's not a pleasant part of the job. I think with MS they hope that a flair could be bacterial or stress or idiopathic. Finally, I flat out asked a specialist what was going on with me, I said is there anything else to test, and he seemed kind of surprised and said, "this is MS." I think he was surprised I didn't realize that. A disconnect can happen between doctors and patients. Generally, they have a good guess, a "provisional diagnosis", but they need to rule things out, and they don't always tell you their thinking process. A doctor friend of mine told me to just ask for their provisional diagnosis. Many patients do not want to hear it until they know the doctor is certain.

That's very different from the people I'm talking about. If you have been seeking a MS diagnosis for 10 or 20 years, you're a hypochondriac or you don't have it. I don't run down to the cancer ward or heart doctor and seek a diagnosis for years. I don't want to second guess other people's illness. But MS is a gravely serious thing. The end result is usually pretty horrible. This isn't a headache, a little pain, a slight amount of dizzyness, I need to take the day off from work thing. When I was diagnosed, I lost my independence, had to quit my job though I didn't want to, had to sell my car, etc. It bugs me when people want the badge of diagnosis but don't have the burden of the condition. I have the burden, yet I have told maybe 5 people in 5 years that I have MS. I hate the way people start treating you differently, start giving you pity, start assuming you are "disabled" and can't do things. I can't imagine why people would seek that out, especially without good reason.

I think there is also a risk of over diagnosis that hurts us. Numerous non-specific symptoms can have multiple causes. Now those people who may not actually have this disease, get their label, and then may participate in studies. This affects the chance of actually finding a cure or treatment for those of us who clearly have it. Let's say, for example with this new clostridium finding, or CCSVI, that someone is looking for the presence of a phenomenon in MS patients and then they find that X percent do not have it, when the real problem is they don't even have MS! I think that's why a certain percent of cases are "benign" and why others are progressive. Two or more different diseases.
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Re: This may sound harsh

Postby centenarian100 » Mon Dec 02, 2013 4:40 pm

To Jerry:

people want explanations for their symptoms. Multiple Sclerosis can cause so many different non-specific symptoms that it is very easy for people to convince themselves that they have the disease. Imagine having a bunch of symptoms like fatigue, heat sensitivity, and tingling and being convinced by Dr. Google that you have MS but not being able to convince your neurologist. It would be pretty frustrating. You would probably be paranoid that if you didn't get diagnosed and treated, you would end up in a wheelchair.

To Cali:

Multiple Sclerosis has very specific diagnostic criteria (check out the link if interested)

Diagnostic criteria for multiple sclerosis: 2010 Revisions to the McDonald criteria: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084507/

The reason for this is to avoid over-diagnosis and mis-diagnosis. The unfortunate result is that some people like yourself will not be diagnosed despite the presence of symptoms which are [retrospectively] related to MS. Obviously, I don't know your specific situation, so I can't say whether or not this applies to you. It may be that your doctors were incompetent, or it may be that you simply didn't meet the diagnostic criteria for MS at that time.
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Re: This may sound harsh

Postby jerrygallow » Tue Dec 03, 2013 12:15 am

This is the latest post today, "Judy asks "Can anyone please tell me how MS can be diagnosed? I just had a very painful CT scan with contrast....next I was told a biopsy of a muscle....which one? I thought that a spinal tap is needed..I was told that is "old ways".....! I have Sjogren's Syndrome, Lupus, Fibromyalgia, Osteoporosis (medication induced), RA, OA, etc. Can anyone tell me???""

"very painful CT scan? Really?
You have RA, Fibro, AND LUPUS? Now you want to claim MS? What, did you hit the misfortune jackpot. I love how she tacks the "etc." on the list of her ailments.

I guess this is what I'm talking about. MS is not just a condition to stick to your long list of ails. It's a pretty specific neurological problem with some specific features. It's not a joke. Sorry for all the venting. I have MS. But you don't see me getting line to go claim RA, lupus and every other condition. IF you have something you have it. If you don't you don't. A big problem is diet and lifestyle, not a lack of labels.
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Re: This may sound harsh

Postby CaliReader » Tue Dec 03, 2013 2:44 pm

Hi Jerry,

I hear you. I hope your disease goes ok and you feel some better. It is frustrating to think someone would want this disease when we are stuck with it.

I spoke up because I've had health care providers who didn't know or believe I was sick until the mri results came in. I look healthy. Even healthier now that I've modified my diet for ms. But no, my situation is not the same as what you were talking about. And I was not knocking down the doctors doors either until just about two years ago. However confused and frustrated I was with my issues, I didn't spot them as anything a doctor could explain or assist with. It turns out they were typical and I was ignorant. Had I known more about neurology... but whatever.

I guess the other thing I was reacting to in your post was when you asked why anyone would want a diagnosis. I don't think any reasonable person wants this diagnosis. Having it though, I've received some side benefits. I'm no longer feeling like a failure for taking the amount of rest my body demands. My husband is more forgiving. He actually said he had thought I was lazy. The meds may or may not help, but I have the option to take them. Also, now I know I need the healthiest diet possible not just a 'healthy' diet and that I need to work harder at exercise than my body wants to.

This is a good conversation. I'm glad you posted your thoughts.
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Re: This may sound harsh

Postby LR1234 » Tue Dec 03, 2013 4:29 pm

Hi jerry a quick glimpse into my story.
I was 17 years old when I could no longer go to college due to extreme fatigue and feeling really unwell all the time, eye issues, numbness, incontinence, flu like symptoms.

I went to drs as I knew something was off and just wanted a magic pill to fix me. The longer it went on the more convinced I was I had MS. I had all the hallmark symptoms and although I really didn't want it to be MS I was watching my aunt go through it and almost chased the drs to tell me it wasn't the awful disease that had bedridden my aunt.

Time after time mris, lumber punctures, etc came back normal and I was reassured it wasn't ms and the disabling symptoms I was experiencing were actually all in my mind or depression.
At this point I started getting desperate, I knew I was not crazy as my symptoms were very real but dr after dr year after year I was labelled with conversion disorders and told to just get on with my life ( yeah great thanks, like I had a choice to snap out of fatigue or vision issues duh!!)

This went on for 14 years, no dr believing a now desperate, upset young girl in their office begging for help from what she believed but wanted on the same hand not to be the dreaded illness that her aunt had.

Eventually at the ripe old age of 31 my biggest relapse to date happened and all those 14 clean mris and 2 previous negative lp's turned positive and I was officially diagnosed.

I was absolutely gutted, there was comfort in being to,d you were crazy, as as long as the tests were normal it wasn't real and at some point I would be well again.

So even though I wanted to prove I had Ms to get some help and support, I really prayed I didn't have MS as it was my worst fear.

I'm 35 years old now,still battling the monster but to the general outsider I seem perfectly well so I am in the closet still, I struggle everyday still and am hoping for that elusive magic pill still, in the meantime though I do EVERYTHING I can to stay well.

My aunt passed away about 5 years before I got my diagnosis and I always said I would do everything I could to have a better chance of defeating it. She did nothing to help herself but I don't know if she would have faired any better had she tried.....I'm thinking yes but who knows

Just to back up my diagnosis I have 3 lesions on my spine, about 10 on my brain, a positive lp and a lot of damage to my optic nerves and retina:(
I chose to take copaxone after a particularly bad cognitive relapse which saw my life being put on hold for 2 years, I have lost my vision in one eye 8 times and had a relapse where my legs tingled and felt hollow so couldn't walk for 6 months or so without feeling uncomfortable

Am I happy I got my diagnosis??? No not really I wanted them to tell me it was a B12 deficiency or something but deep down I knew what it was and just wanted a dr to help me as at the time I believed the drugs could actually stop me getting worse. (Now I know a lifestyle change is priority number 1)
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Re: This may sound harsh

Postby mmpetunia » Tue Dec 03, 2013 7:38 pm

i was just discussing this last night with my partner. my sister keeps trying to get doctors to give her an MRI to rule out MS, even though she does not have any classic MS symptoms or any clearly defined relapse-like periods. she DOES however, have many, many herniated discs and chronic pain...with no health insurance. if she had a diagnosis of MS she told me once it's the "golden ticket" to disability benefits. i find it a very unsettling attitude. aside from that i can't really articulate what i find offensive about it as a person with MS, but i do. i know that for her its a sign of desperation. i don't think it is anything other than human nature to want to make the unknown known. and for her, if she could get disability benefits she could get health insurance which means she could feel better. i can't begrudge anyone that. it's a desperate act for sure but i think that my sister is just one example of the millions of people out there who are grasping at straws trying to feel better too. i doubt that more than a very small minority of truly mentally ill people would take joy in a MS diagnosis. the rest i think are just trying to make sense of a bunch of bad, scary things that are happening to them.
Dx: 9/8/11 RRMS
OMS diet plus lean poultry
Tecfidera as of 8/21/2014
18+ brain lesions and 6 spinal lesions
EDSS 1.5-2
http://mylaceybrain.wordpress.com
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Re: This may sound harsh

Postby jerrygallow » Tue Dec 03, 2013 8:06 pm

thanks for the story LR1234. I didn't realize that people could have non specific symptoms for that long and then it ultimately become MS. I'm surprised you endured 14 MRIs and each time was told it was normal. Too bad you couldn't get in front of that curve with vitamin D or something, which has been shown to reduce your chances of developing the full disease. For me it was optic neurits over a weekend...me denying it for 10 months though I couldn't see out of one eye, then ON on the other eye so I couldn't deny it, followed by a positive MRI. Pretty fast. I do agree that many of these people do have things wrong and want answers. The sad irony is that with MS there really aren't many answers. None of the medications work that well.
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Re: This may sound harsh

Postby cognitivelydissonant » Thu Dec 05, 2013 11:52 am

Well...I'm probably one of those types of people who annoy you, but let me try to provide some perspective on what my situation is like for me:

I don't want MS, and I don't want a diagnosis so that I can have access to a magic pill that will make all of my symptoms go away. I already know that no such thing exists. I know people with MS who never get any relief no matter what medications they try. I also don't want a diagnosis so that I can get on disability or get sympathy. That is the LAST thing I want. I want to go to med school and be a successful doctor, and before I started developing unexplained cognitive problems, I was brilliant enough that I probably could have pulled it off. What I really want is to wake up tomorrow symptom free so that I can move on with my life. However, after 10 years of suffering from unexplained symptoms, several during which I prayed for a miraculous cure every single day, I have long given up hope that that will ever happen for me.

So if the symptoms aren't going to go away regardless, it would be really nice to have an explanation for them so that I can let other people know why I struggle and fail at things that I used to be really good at. For instance, I have trouble remembering words now, and sometimes when I'm typing, I type things that don't make sense. Earlier, I was trying to tell my friend that my brother was really sick with the flu. Instead, I typed, "My problem is really sick." I do stuff like that ALL of the time, and since I have no explanation for why I do it, people just think it's because I'm stupid or on drugs or something. As someone who used to be very intelligent, this is devastating to me; I don't like to be perceived as dumb. Another example: a few weeks ago, a good friend of mine put in my name with her boss to get me a job writing websites for a company. Since I'm so slow at writing now, I kept getting yelled at for not meeting my deadlines and had to quit the job. Now my friend who referred me is mad at me and thinks I'm a lazy screwup because she knew me before I developed the cognitive problems and thinks I'm still as fast and as good of a writer as I once was. So now she basically thinks I made her look stupid for referring me and that I didn't give the job my best effort. It's really, really hard to have a friend mad at you for something you couldn't have helped, and you can't even explain to her WHY you failed at the job because you don't have a diagnosis and have been told by numerous doctors that there's nothing wrong with you. One time, my dad asked me to pick my brother up from school, and I asked if he could ask my sister to do it instead because I was feeling dizzy and was afraid I would crash the car. My sister thinks I lie about my symptoms since doctors say they don't exist, so she got mad at me and started yelling at me that I was lazy and needed to get the he** out of the house since I couldn't help out by picking up my brother. I just sat in my room crying while she yelled a bunch of insults at me through the door; I really was dizzy, I wasn't lying. It feels like the entire world is against me. It's a really lonely place to be. If I could get a diagnosis, maybe people would be a little more understanding of me, which would take a lot of pressure off of me and allow me to wake up not feeling like the world is against me for once. It would give me permission to relax and just do the best I can in life because hopefully I wouldn't get yelled at as much for making mistakes that I wouldn't have made if my brain were working the way it used to.

Anyway, I'm going to cut this off here because my "psychosomatic" headache is killing me. Hopefully that provided some perspective on what things are like from the other side of the fence. I'm not trying to intrude on your MS club. I'm just trying to not be miserable anymore.
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Re: This may sound harsh

Postby jerrygallow » Thu Dec 05, 2013 8:07 pm

Thanks cognitivelydissonant. I understand your point. I also have the cognitive issues. Before losing vision, I was a grad student at an ivy league school. I remember giving a presentation in history class where I literally couldn't remember anything...names, dates, concepts, no matter how much I read them, thought about it and tried. The rest of the class just sat there blankly staring at me, no-doubt thinking, how did this guy get past the admissions office. I sometimes transpose words, can't remember books I've read, forget the names of distant family members, forget EVERYTHING my friends tell me, like how many kids they have, what they wan't to do career-wise, etc. (unrelated point--we seldom discuss how MS quickly deteriorates your social life. My mind just goes blank even if I can muster the energy to go out. That was before losing the ability to drive. Now everyone seems to just be scared of me). So I know how it feels to go from being pretty smart to feeling stupid.

Just today I sat in on a murder trial and thought, with limited vision I could perhaps get back into the practice of law. But I absolutely could not do it with limited memory. The analogy I use is when you go to the eye doctor and get a new set of glasses then realize how well you should be seeing, but didn't realize that your "normal" before was subpar. When I see how easily the other lawyers and the judge can follow the witnesses, keep track of what they say, and hold on the facts presented, I see that I just don't have the ability to do it anymore.

And I guess that's what irks me at the end of the day. I don't begrudge people who probably have MS from seeking a diagnosis. I guess what I have in mind is that patient who just tacks MS onto a long list of complaints about small things that everybody faces as they age. Like I said before, I have MS, but I don't claim Rheumatoid Arthritis, Lupus, and everything else. When I see people doing that, I big red flag goes up, and I proverbially roll my eyes.

Maybe as an analogy, so I don't seem like a big jerk. It's like those shows like American Idol where a contestant will claim to be a war hero and everybody cheers. Then a few weeks later they reveal the guy lied about it all. We applaud service. We dislike exaggeration. That's what I'm getting at. No special club here. If there is, I'm trying my best to get the heck out of it
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Re: This may sound harsh

Postby cognitivelydissonant » Fri Dec 06, 2013 12:45 am

Thanks for your response, jerrygallow. I'm glad there are people who are able to relate to my experience struggling with cognitive problems. At the same time, I hate that there are people who can relate because it's an awful thing to go through, especially for those of us who took above-average intellectual capacities for granted before the onset of the issues. I'm not saying I was a genius by any stretch, but I was a fast learner, cognitively adaptable, and most things in life came easily enough to me. I remember not even being able to wrap my head around why people in my classes, both before and while in my first few years of college would struggle to just understand concepts we were learning because everything just clicked for me. Now I'm on the opposite side of that fence, and it's rough to say the least. The cognitive issues began around my second year in college and didn't reach their worst until I was nearing graduation. Once they did begin, I was still smart enough to find ways to work around them to the best of my ability, so it's been difficult to get people to even believe me when I say I'm struggling because from the outside, I seem to function normally enough most of the time. I'm not sure if that even makes sense.

I can relate to being in situations where you feel like people must be thinking, "How on earth did she even GET here?!" It sucks to feel like a fraud. Since the issues didn't reach their worst until after I had almost finished college and had already successfully held a few job positions, people look at my track record, grades, recommendations, etc. and think that I'm obviously a competent and hard worker. That's how I still manage to get involved in things that it takes brains to get into, such as that job I mentioned that I had to quit. Then when I get there, I don't live up to the expectations people have for me, and it's a frustrating situation for everyone. Similarly to how you thought, "Maybe I can still practice law," I had the thought that maybe I could return to school, finish up my pre-med prerequisites and still practice medicine a few months ago. I applied to several schools and got into all of them because on paper, my 3.95 college GPA says I'm a great student. Too bad those schools have no clue what they're dealing with now. I'm starting up at one of those schools in January, and hopefully I'll be able to make it work, but let's be real -- if I struggled in a job writing websites, how on earth am I going to find and maintain a new job, juggle work, classes, and extracurriculars, and eventually make it as a medical student? We'll see how things go, though.

My social life definitely struggles because of my issues as well. It's basically nonexistent. I've lost too many friends because they were tired of me forgetting to respond to their messages and calls or canceling plans because I didn't feel well. I keep thinking that if I get a diagnosis so I can tell people WHY I do these things and that I really don't mean to be a crappy friend, maybe they'll be more understanding, but maybe that's just wishful thinking on my part. At the very least, it would allow ME to know why I do those things so that I'd be less hard on myself. Right now, I just feel like a failure who can't manage to get anything right and like it's my own fault since doctors keep telling me I'm inventing these symptoms in my head.

I understand your frustration with people who just have minor symptoms like a little fatigue or a headache here and there trying to get the benefits of an MS diagnosis without actually having to go through the he** that the condition (or similar conditions) bring. My little sister is sort of like that in her own way. She has a really easy life and always wants people to feel sorry for her for little things, and it's frustrating because she has NO clue what it's like to truly suffer. Sometimes I feel like that about myself. I'll have a good few days and think, "Wow, you're really pathetic. There's nothing really even wrong with you, and you get so hysterical over your situation all of the time." Then the symptoms flare up again, and I'm reminded that things really are BAD when they're bad. But yeah, I understand. It's just frustrating to be lumped in with the hysterics, the hypochondriacs, the fakers, and the attention seekers because I know that I'm not one of them. I don't claim MS or any other disease I haven't been diagnosed with. I've had people TELL me I have Lyme disease before, and I think they're insane. Unless someone is a physician, he or she is not qualified to diagnose themselves or me with anything. The only thing I claim is to have a real problem that I'd really like diagnosed to make it just a little bit easier to cope with. Whether that diagnosis is MS, lupus, RA, NF, malabsorption issues, a bacterial infection, whatever....I just want to know the truth. I'm certainly not set on an MS diagnosis. If it's not MS, it's not MS.
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