This may sound harsh

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Re: This may sound harsh

Postby amberfer » Thu Dec 19, 2013 9:22 pm

Oh I HEAR you! My mother took my sister to multiple doctors after researching her symptoms online and claiming certain diagnoses; and if a doctor didn't give her that diagnosis, she went to another one. Eventually she turned to the only ones who would take her money - alternative medicine practicioners.

I feel so thankful that I received a diagnosis so quickly. But it's true, people just want a name for what they are going through. I didn't tell anyone about my symptoms because I was convinced it was just depression, all in my head, I was being paranoid, etc. (This is mainly because of my skepticism of my sister's problems, since she couldn't get a diagnosis.) But oh, how relieved I was when I received a diagnosis right away! I just think of all the people who doctor-hop and then finally receive a diagnosis after years. It certainly would be annoying for practicioners, but better safe than sorry.
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Re: This may sound harsh

Postby centenarian100 » Fri Dec 20, 2013 12:15 pm

amberfer wrote:Oh I HEAR you! My mother took my sister to multiple doctors after researching her symptoms online and claiming certain diagnoses; and if a doctor didn't give her that diagnosis, she went to another one. Eventually she turned to the only ones who would take her money - alternative medicine practicioners.

I feel so thankful that I received a diagnosis so quickly. But it's true, people just want a name for what they are going through. I didn't tell anyone about my symptoms because I was convinced it was just depression, all in my head, I was being paranoid, etc. (This is mainly because of my skepticism of my sister's problems, since she couldn't get a diagnosis.) But oh, how relieved I was when I received a diagnosis right away! I just think of all the people who doctor-hop and then finally receive a diagnosis after years. It certainly would be annoying for practicioners, but better safe than sorry.


Labeling is very powerful.

read up on the Rosenhan experiment:
http://en.wikipedia.org/wiki/Rosenhan_experiment

Labels sometimes make healthy people feel sick and sick people feel sicker.

Labels have great use in their ability to put people into categories and help to direct treatment, but they can also be very dangerous. Many physicans question whether or not giving people with non-specific symptoms a syndromic diagnosis like "fibromyalgia" or "irritable bowel syndrome" is truly helpful. Perhaps it is better to admit that modern medicine simply cannot explain a person's symptoms.
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Re: This may sound harsh

Postby brneyes475 » Sun Feb 09, 2014 11:28 am

I am new to this forum and stumbled across your story and it sounds EXACTLY like what I have been going through for years now. I am in the process of being evaluated for "possible MS" by a Neuro I trust....but I have been to several neuro's through the years that have all treated me like I was crazy when my MRIs came back clean. A couple years ago one even suggested I would "benefit from psychological counseling". Jackass.

I just had another clean brain and c-spine MRI with contrast....and now we are waiting on blood work and a balance test before doing the LP. The doc keeps telling me that MS is a clinical diagnosis so he won't rule it out based on the MRI because I am so symptomatic....especially the crippling, debilitating fatigue I experience on a daily basis. I think they are trying to rule out other things first until MS is all that is left. I also have urinary and GI issues that I did not realize were common in MS until recently. That was another, "oh shit", moment for me. But like I said...I am thankful to come across your story because it is hard sometimes reconciling how crappy I feel all the time with no medical explanation and not feeling like a complete crazy person.
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Re: This may sound harsh

Postby THX1138 » Sun Feb 09, 2014 12:26 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


It makes me wonder why anyone would want to be diagnosed with a disease for which the doctors have no satisfying treatments.
Once I was diagnosed with ms, more often than not, the doctors would attribute a symptom to ms thus rendering them largely helpless and not responsible to do anything about it.

Now, much of the burden of diagnosis is in my hands. They ought to give me discount!

Sorry brneyes475 if it looked like I was replying to you. I had neglected to put in the above quote (until this revision), which my post was in reference to.

When a doctor uses "crazy" as a diagnosis, the doctor is just demonstrating his/her incompetence and lack of compassion. Such a doctor is, in my opinion, negligent at best.

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Last edited by THX1138 on Mon Feb 10, 2014 11:06 pm, edited 3 times in total.
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Re: This may sound harsh

Postby lyndacarol » Sun Feb 09, 2014 1:48 pm

brneyes475 wrote:I am new to this forum and stumbled across your story and it sounds EXACTLY like what I have been going through for years now. I am in the process of being evaluated for "possible MS" by a Neuro I trust....but I have been to several neuro's through the years that have all treated me like I was crazy when my MRIs came back clean. A couple years ago one even suggested I would "benefit from psychological counseling". Jackass.

I just had another clean brain and c-spine MRI with contrast....and now we are waiting on blood work and a balance test before doing the LP. The doc keeps telling me that MS is a clinical diagnosis so he won't rule it out based on the MRI because I am so symptomatic....especially the crippling, debilitating fatigue I experience on a daily basis. I think they are trying to rule out other things first until MS is all that is left. I also have urinary and GI issues that I did not realize were common in MS until recently. That was another, "oh shit", moment for me. But like I said...I am thankful to come across your story because it is hard sometimes reconciling how crappy I feel all the time with no medical explanation and not feeling like a complete crazy person.

Welcome to ThisIsMS, brneyes475.

I am sure that you are NOT crazy – my first three MRIs came back with "normal" results, I was diagnosed after the fourth MRI showed some lesions. My other tests (EMG, evoked potentials) were also always normal.

Compare the evaluation by your neurologist to these suggestions from the University of Chicago:

http://peripheralneuropathycenter.uchic ... #bloodtest

Have the following blood tests been included in your blood workup?

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B


I think the tests for wheat/gluten sensitivity (or celiac disease, in the extreme case) are very important for you since you mention "crippling, debilitating fatigue" – chronic fatigue (as well as anemia) is always mentioned as a symptom in the Atypical (Extra-Intestinal) form of gluten sensitivity.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: This may sound harsh

Postby maia447 » Mon Feb 10, 2014 6:18 pm

I'd like to share my experience on this topic.

In 1982 I experienced 6 months of severe vertigo. It was diagnosed as vestibular neuralgia. In 1987, I was dizzy, had foot drop, fatigue and trouble thinking for 5 weeks. Diagnosis: "stress"

In 1996 I was ill with giardiasis but never recovered after the GI symptoms resolved. Staggering gait, fatigue such that I couldn't hold my head up, blurred vision, and rapid onset stupidity. First MRI showed 7 lesions. No one said MS.

1998 sensorineural hearing loss, totally deaf in left ear. Recovered half way with steroids.

DX during these years was depression, fibromyalgia, hypochondria. Was using an electric wheelchair, couldn't drive and rarely left the house without assistance.

In 1999 an MRI showed a new lesion - that is considered diagnostic. I was shocked that it was MS, but relieved to know what was wrong with me. I resolved to have a rich, rewarding life, MS or no MS, and that, I have done.

17 years from 1st exacerbation to diagnosis. I think it was better back in the day when they diagnosed you by putting you in a sauna and seeing if you get symptoms. (I've had heat sensitivity since my teens in the 1960s).

At least these days they treat clinically isolated syndrome. My niece had numb hands and a few lesions and they put her on Copaxone right way, no waiting for a 'new' lesion. She has had no recurrence of symptoms and works full time in a high stress job, including tours in Afghanistan and Iraq. No heat sensitivity for her, lucky girl!

I've been on disability since 1996, but had to fight to the death for it, so to speak. They didn't want to pay past 2 years because it was 'psychiatric'. Depression and fibromyalgia were both considered psychiatric by my insurer. When I got on Social Security disability, they stopped fighting, but I still had to prove I was disabled every two years.

My husband didn't know me 'before'. Sometimes I swear he doesn't believe the stories of what I used to do for a living, because I can barely balance the checking account these days. I laugh it off. I refuse to feel humiliated. I say, "I have a brain disease. Deal with it."

peace and joy to everyone here.
this is my first post
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Re: This may sound harsh

Postby lyndacarol » Tue Feb 11, 2014 7:53 am

maia447 wrote:I'd like to share my experience on this topic.

In 1982 I experienced 6 months of severe vertigo. It was diagnosed as vestibular neuralgia. In 1987, I was dizzy, had foot drop, fatigue and trouble thinking for 5 weeks. Diagnosis: "stress"

In 1996 I was ill with giardiasis but never recovered after the GI symptoms resolved. Staggering gait, fatigue such that I couldn't hold my head up, blurred vision, and rapid onset stupidity. First MRI showed 7 lesions. No one said MS.

1998 sensorineural hearing loss, totally deaf in left ear. Recovered half way with steroids.

DX during these years was depression, fibromyalgia, hypochondria. Was using an electric wheelchair, couldn't drive and rarely left the house without assistance.

In 1999 an MRI showed a new lesion - that is considered diagnostic. I was shocked that it was MS, but relieved to know what was wrong with me. I resolved to have a rich, rewarding life, MS or no MS, and that, I have done.

17 years from 1st exacerbation to diagnosis. I think it was better back in the day when they diagnosed you by putting you in a sauna and seeing if you get symptoms. (I've had heat sensitivity since my teens in the 1960s).

At least these days they treat clinically isolated syndrome. My niece had numb hands and a few lesions and they put her on Copaxone right way, no waiting for a 'new' lesion. She has had no recurrence of symptoms and works full time in a high stress job, including tours in Afghanistan and Iraq. No heat sensitivity for her, lucky girl!

I've been on disability since 1996, but had to fight to the death for it, so to speak. They didn't want to pay past 2 years because it was 'psychiatric'. Depression and fibromyalgia were both considered psychiatric by my insurer. When I got on Social Security disability, they stopped fighting, but I still had to prove I was disabled every two years.

My husband didn't know me 'before'. Sometimes I swear he doesn't believe the stories of what I used to do for a living, because I can barely balance the checking account these days. I laugh it off. I refuse to feel humiliated. I say, "I have a brain disease. Deal with it."

peace and joy to everyone here.
this is my first post
Maia

Welcome to ThisIsMS, Maia. Thank you for sharing your experiences with MS so eloquently. You make a valuable contribution to this website.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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