Misdiagnosed with MS

[Marco]

Limbo sucks, but not as bad as being misdiagnosed with MS. Here is further support for getting a second opinion from a MS Specialist.



Researchers found that nearly 1 in 5 people who had received a diagnosis of multiple sclerosis had other unrelated conditions.


Identifying traits in misdiagnosed people
A team of researchers from the University of California Los Angeles (UCLA) and the University of Vermont in Burlington analyzed the cases of 241 people who had received an MS diagnosis. Other doctors had previously referred these people to two academic medical centers in Los Angeles.

Dr. Marwa Kaisey and Dr. Nancy Sicotte, both from the Cedars-Sinai Medical Center in Los Angeles, CA, led the new research.

The symptoms of MS are so similar to the symptoms of some other conditions that it can be difficult for doctors to make the right diagnosis. "The diagnosis of MS is tricky. Both the symptoms and MRI testing results can look like other conditions, such as stroke, migraines, and vitamin B12 deficiency," Dr. Kaisey said.

The study aimed at determining how many people received a misdiagnosis of MS, and identifying common characteristics in misdiagnosed patients.

The researchers found that of the people misdiagnosed with MS, many received MS treatment for 4 years before receiving the right diagnosis.

The researchers identified that the condition most often correctly diagnosed was migraine, followed by radiologically isolated syndrome — a condition in which the results of MRI scans determined that the people had MS, despite them not experiencing any other symptoms linked to MS.

Risks and costs of incorrect diagnoses
Among people who received a wrong diagnosis, 72 percent had received treatment for MS, and of those, 48 percent had received treatments that can lead to progressive multifocal leukoencephalopathy (PML), which is a rare viral infection that targets nerve cells and damages the white matter in the brain.

The researchers concluded that the estimated costs of unnecessary treatments that they identified in just this study reached almost $10 million.

"I've seen patients suffering side effects from the medication they were taking for a disease they didn't have. Meanwhile, they weren't getting treatment for what they did have. The cost to the patient is huge — medically, psychologically, financially," Dr. Kaisey adds.

Source: https://www.medicalnewstoday.com/articles/325008.php

[its2much]

I was diagnosed in 2006. I saw four different neurologists for their opinion. Was hoping to get better news!

[Jules A]

I wish.

Diagnosing physician was general neurologist so I sought second opinion at large MS center. I have been seen 3 MS specialists there over the years, sadly not one mentioned this was just an awful mistake.

[oceanpride]

Interesting information Marco ! And also on that very powerful MRI machine. The new generation of MSers should benefit from the trials and mishaps of this one. I think they are

learning more all the time.
It’s no different in any other industry. We all have to learn from our mistakes
Thank you for sharing.

[pennstater]

Had my 2nd opinion at MS clinic as well. Including diagnosis, 4 neuros, all agree. No take back of diagnosis.

Trying to decide if I want to go back to the clinic on 2nd opinion - they now have 7t machine. Not sure if used for general public or just in trials. Also not sure if I want to know what my grey matter looks like. Lots to think about.

[SNOOPY]

Multiple Sclerosis has a very long history of being misdiagnosed. We have seen it even on MSWorld, multiple times, even from people that had been diagnosed for many years. It's also obvious that there are many of us that have never been considered misdiagnosed.

I would gladly give up my diagnosis of this disease, in a heart beat. So far the words "you do not have MS" or "you have been misdiagnosed" has never, ever, come up in a conversation with a Neurologist. I very much hate this disease.

Since this disease has the very real possibility of being misdiagnosed I urge everyone, diagnosed or those going through the diagnostic process to proceed with caution and even get a second opinion. Some who receive a diagnosis of MS can, at some point, be told they do not have MS. Some go on to be re-diagnosed with MS and some do not.

Best wishes to all.

[MyGirlsMom]

Hello friends!
In searching this topic of misdiagnosis on the Message board this thread seemed appropriate to respond to.

As you all know I have been a part of this MS community for about a decade. Recently, due to a variety of health problems I visited the Mayo Clinic. As it turns out, the MS neurologist there does not feel I have MS. Yes, I have seen a couple very well respected MS neurologists during this past decade...and this new outcome is rather quite surprising to me! Not at all what I expected! (Especially after taking a DMD injection for many, many years!!!). As the other comments in this thread state, MS misdiagnosis happens quite frequently...and I may now be a part of that statistic.

The new diagnosis is Fibromyalgia. Which honestly seems rather accurate. For those that don’t know, Fibromyalgia is a real, physical health issue with the brain and CNS responding incorrectly to stimuli. It has also been demonstrated on functional MRIs.

Perhaps I have both MS and Fibro?? I am hoping over time someone can actually figure this all out. Benign MS perhaps?

Anyways, now I am in a period of transition.....Learning to rethink and respond to every symptom I deal with daily in a new way. I am definitely trying to sort this all out in my mind.

Of course, regardless of the diagnosis, I am focused on living each day and working to manage my symptoms the best I can and trying to live my best life.

I will continue to keep you all posted as I learn more and as more information becomes available to me. Thanks friends!!

[pennstater]

Hello friends!
In searching this topic of misdiagnosis on the Message board this thread seemed appropriate to respond to.

As you all know I have been a part of this MS community for about a decade. Recently, due to a variety of health problems I visited the Mayo Clinic. As it turns out, the MS neurologist there does not feel I have MS. Yes, I have seen a couple very well respected MS neurologists during this past decade...and this new outcome is rather quite surprising to me! Not at all what I expected! (Especially after taking a DMD injection for many, many years!!!). As the other comments in this thread state, MS misdiagnosis happens quite frequently...and I may now be a part of that statistic.

The new diagnosis is Fibromyalgia. Which honestly seems rather accurate. For those that don’t know, Fibromyalgia is a real, physical health issue with the brain and CNS responding incorrectly to stimuli. It has also been demonstrated on functional MRIs.

Perhaps I have both MS and Fibro?? I am hoping over time someone can actually figure this all out. Benign MS perhaps?

Anyways, now I am in a period of transition.....Learning to rethink and respond to every symptom I deal with daily in a new way. I am definitely trying to sort this all out in my mind.

Of course, regardless of the diagnosis, I am focused on living each day and working to manage my symptoms the best I can and trying to live my best life.

I will continue to keep you all posted as I learn more and as more information becomes available to me. Thanks friends!!

Wow MGM - that is a lot to take in for you. I hope that you get your answers quickly and symptoms are managed well. Please do keep us informed. Lots of luck to you!

[Tawanda]

Hello friends!
In searching this topic of misdiagnosis on the Message board this thread seemed appropriate to respond to.

As you all know I have been a part of this MS community for about a decade. Recently, due to a variety of health problems I visited the Mayo Clinic. As it turns out, the MS neurologist there does not feel I have MS. Yes, I have seen a couple very well respected MS neurologists during this past decade...and this new outcome is rather quite surprising to me! Not at all what I expected! (Especially after taking a DMD injection for many, many years!!!). As the other comments in this thread state, MS misdiagnosis happens quite frequently...and I may now be a part of that statistic.

The new diagnosis is Fibromyalgia. Which honestly seems rather accurate. For those that don’t know, Fibromyalgia is a real, physical health issue with the brain and CNS responding incorrectly to stimuli. It has also been demonstrated on functional MRIs.

Perhaps I have both MS and Fibro?? I am hoping over time someone can actually figure this all out. Benign MS perhaps?

Anyways, now I am in a period of transition.....Learning to rethink and respond to every symptom I deal with daily in a new way. I am definitely trying to sort this all out in my mind.

Of course, regardless of the diagnosis, I am focused on living each day and working to manage my symptoms the best I can and trying to live my best life.

I will continue to keep you all posted as I learn more and as more information becomes available to me. Thanks friends!!

Can I ask what your MRIs looked like? I was always told the MRI was the "gold standard" for diagnosing MS. I realize strokes, a history of migraines and a few other things (Lyme?) may show up on MRIs, but I dunno??? My MRIs were a polluted mess. I have had Migraines and Lyme, and that may have been part of the mess, but all my MSey physical symptoms would have removed all doubt.

[MSLazarus]

I was diagnosed at mass General Hospital by dr. Alan Steere. Steere is the guy who first identified Lyme. Since I had already been ill for a year the thinking was that the antibiotics they now give would be useless for me.

About 8 years later I was diagnosed with MS. Steere had, by then, written a paper about the danger of untreated Lyme. His thinking was that it could morph into something else. Like MS.

[MyGirlsMom]

Thank you all for your comments!

This whole situation has me baffled and feeling a bit unsure if I am managing my health correctly. Now a bit more than a month out from this situation of it possibly not being MS, I am focusing on symptoms and management of my well-being and letting go of the classified diagnosis.

That said, people (friends) want to know...do I have MS or not? They want the answer to be simple. Unfortunately it is just not!

I am now leaning toward thinking benign MS....just because I don’t know what else to think. Could 4 well respected neurologists possibly be wrong? For 10 years??

I just don’t know...

With my other health issues, I feel like the healthcare system has failed me. Now I seem to over analyze and freak out on every pain, ache, etc. I am struggling to feel well, strong and confident. Yes, I know that it would seem great for someone to say you don’t have MS, but to be straight forward, it just isn’t that clear and easy.

Finally, this group has been my place to go to....and to no longer be a part of it is a loss too. Along with another couple MS communities. I lost “my people” and that loss makes me sad too.

I hope you all understand and don’t take this is a bad way...I just don’t seem to know what to believe anymore.

As always, thanks for listening!! 💕

[pennstater]

Glad to see a new post. You are wise for the time being to focus on getting symptoms under control and your general health.

Hopefully the neuro explained to you why he was ruling out MS. If not, maybe have another visit, then you can discuss. I am sure even if discussed, it was hard to take in due to the shock of it all.

I can understand how confusing it must be. On one hand, great to not have MS. On the other hand, it has been a part of your life for a long time and the support system seems different now. In living our daily lives, MS is always part of our thoughts and how we react and make decisions. Some days, just a small thought, other days, much bigger. I am sure it is not something you can just turn off overnight.

Please know that even if not MS, you are always welcome here as a friend and supporter to us all and vice versa. While the diagnosis, cause, and treatment of symptoms may be different, we share the same relatable experience of trying to get through our days with these symptoms. So hopefully you may continue to get some support from us as well.

[SNOOPY]

Hi MyGirlsMom.

I am sorry to hear about the situation you find yourself in. Although many of us say we would be happy if told we did not have MS there is a bunch of other questions and emotions that would go into that announcement, you are living proof of that

I hope that in time you will have answers to what is actually going on with your health be it MS, something else, or a combination of health issues. I wish you blessings and peace

[GardeningMSer]

Marco,

Thanks for posting this - I found it relevant following my first lumbar MRI ever.

History:
On Jan 1, 2000 I developed an odd cramp in my left foot while taking a walk. Within a month saw a neuro, had a brain MRI that showed possible MS effects. Blood work was not conclusive. I've been on DMDs since then, Ocrevus for about two years. Since 2000 my left leg has become a bit weaker but I can walk using forearm crutches, though I minimize use of the crutches because using them results in a very painful right hand - one of these days I'll see if a padded cycling glove might help.

I had both a brain and a lumbar MRI in August, the former showing no changes, the latter showing compressed disks near L3 and L4 and a fractured vertebra. There is no pain associated with this.

Besides my weak left leg, I have bladder and bowel urgency.

Neuro said I might want a laminectomy - a procedure I will avoid as long as I can - I've known too many folks who had similar procedures that weren't effective.

Is it possible that some of my MS symptoms are actually a result of the compressed disks and fractured vertebra?

I would appreciate thoughts and suggestions on how to proceed.

I am a 70 year old retired male, live near San Francisco and have excellent medical insurance.

Thanks!

Limbo sucks, but not as bad as being misdiagnosed with MS. Here is further support for getting a second opinion from a MS Specialist.



Researchers found that nearly 1 in 5 people who had received a diagnosis of multiple sclerosis had other unrelated conditions.


Identifying traits in misdiagnosed people
A team of researchers from the University of California Los Angeles (UCLA) and the University of Vermont in Burlington analyzed the cases of 241 people who had received an MS diagnosis. Other doctors had previously referred these people to two academic medical centers in Los Angeles.

Dr. Marwa Kaisey and Dr. Nancy Sicotte, both from the Cedars-Sinai Medical Center in Los Angeles, CA, led the new research.

The symptoms of MS are so similar to the symptoms of some other conditions that it can be difficult for doctors to make the right diagnosis. "The diagnosis of MS is tricky. Both the symptoms and MRI testing results can look like other conditions, such as stroke, migraines, and vitamin B12 deficiency," Dr. Kaisey said.

The study aimed at determining how many people received a misdiagnosis of MS, and identifying common characteristics in misdiagnosed patients.

The researchers found that of the people misdiagnosed with MS, many received MS treatment for 4 years before receiving the right diagnosis.

The researchers identified that the condition most often correctly diagnosed was migraine, followed by radiologically isolated syndrome — a condition in which the results of MRI scans determined that the people had MS, despite them not experiencing any other symptoms linked to MS.

Risks and costs of incorrect diagnoses
Among people who received a wrong diagnosis, 72 percent had received treatment for MS, and of those, 48 percent had received treatments that can lead to progressive multifocal leukoencephalopathy (PML), which is a rare viral infection that targets nerve cells and damages the white matter in the brain.

The researchers concluded that the estimated costs of unnecessary treatments that they identified in just this study reached almost $10 million.

"I've seen patients suffering side effects from the medication they were taking for a disease they didn't have. Meanwhile, they weren't getting treatment for what they did have. The cost to the patient is huge — medically, psychologically, financially," Dr. Kaisey adds.

Source: https://www.medicalnewstoday.com/articles/325008.php

[Tawanda]

I would love to hear what happened with people who were misdiagnosed! For instance, if all you really needed was a B-12 pill/shot, and you were misdiagnosed with MS for years, would you start creating your own MS symptoms? Suffer from depression? Quit your job? Like a reverse placebo (if that's a thing) effect or something. You could reverse it, too: misdiagnosed with a B-12 deficiency, but in reality you have MS??

For years I have heard that the MRI is the gold standard for MS diagnosis. Although I would have preferred almost any other disease except for maybe cancer (B-12 deficiency, pinched nerve, fibromyalgia, Lyme, etc. were all possibilities 15 years ago), I too am in the "I wish" club!