Conversion disorder vs MS

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Crispy66
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Conversion disorder vs MS

Post by Crispy66 »

Hi there folks,
This is my first time posting on this forum and I'm not sure quite what to expect, but Im really hope it is a positive avenue for sharing and gaining insight and knowledge into the world of demylinating diseases.

Two and a half years ago my life looked so different from what it does today. I just had completed my first speed walking marathon, learnt how to snowshoe, hiked miles through the backwoods, played soccer, the guitar and generally felt more alive than I had ever done. I had successfully overcome the painful traumas of my childhood thanks to the love and support of my wonderful husband and children and I could safely say that I was actually going places...I had a great job as Executive Director, the respect of my colleagues and peers and had just begun a new Masters degree. Happy times!

But isnt it amazing how quickly life can change eh? I first noticed the change during soccer practice. I had made a simple run for the ball when my right leg gave way. It felt so strange...like jelly. Then in the weeks and months that followed other 'weird' stuff happened.

After dictating a letter to my secretary i sat down to proof read but realized that I could not see out of my right eye. I was too afraid to say what was happening and struggled for over a month without vision in my right eye.

Just when my sight started to improve the cognitive stuff began to happen. It was most alarming...I would type or write whole letters or case notes but on review find it was all nonsense. It felt like my neurons were miss firing or connecting with the wrong pathways. I remember crying in my car after visiting a new client. I had wanted to write the name Natalie but no matter how many times I tried it came out as something completely different. Sometimes I struggled to comprehen language. People would talk to me and it made no sense. It was just sounds. Other times I would get auditory overload when I went into crowded place and find my body responded by wanting to shut down.

I saw my doctor many times during that first year and she put it all down to stress. The thing is I didn't have excessive stress prior to these physical changes I felt great. Still the doctor insisted I must have stress. It went on and on so I changed doctors.

My new doctor seemed attentive at first and refered me to a neurologist but he could not find anything conclusive at that time. However, a month later I lost control of my bowels which prompted an MRI. It was a difficult time and had a devasting affect on my confidence and working day. I was refered to a specialist but told it may be some time before I'm seen. My anxiety levels increased as a result. Six months later an appointment date was received but by that time the incontinence had subsided so tests were inconclusive.

Ten months later it all began again but this time with new 'weird' stuff. My legs would get hot and irritable. I had a constant feeling of pins and needles and my core muscles would lose strength. I found myself frequently off balance and bumping into things. Cognition lapses came and went, as did my vision. I went to the doctor over and over again asking her to explain what was happening to me. She always said the same - stress. The physical and cognitive changes were often intermittent but worrying nonetheless.

As my symtoms rapidly progressed my role and ability as Executive director became compromised. I saw the doctor again and asked for another neurological consult thats when she asked if I had ever been abused as a child. It came from nowhere. A question that was to retraumatice me over and over again as the medical profession got hold of it regurgitated at every opportunity. Needless to say this invasion of my privacy sent me spiraling downward and exacerbated my physical symptoms. That's when my doctor gave me a working diagnosis of CONVERSION DISORDER. No counseling or therapy was provided by her or anyone else after this event. I had to seek it out for myself. (This was July 2010)

On October 18, 2010 my career came to an end. During an orientation session with new staff I began to lose feeling in my right thigh. A horrible numbness rapidly travelled both down my right leg and up through my right arm and Face. A colleague noticed a change in my demeanor and the slump and before I knew it I was at the hospital with a suspected stroke!

An MRI showed two white spots on the brain but no stroke markers. That night I experienced full right side paralysis and temporary loss of speech. It was a frightening experience which was exacerbated by my doctors' arrival and her writing on my file 'working diagnosis conversion disorder'. As soon as this went on my chart I was treated like a malingerer. I was left unattended and all neurological obs were stopped.

While in hospital my childhood traumas were disclosed without my consent and I was forced into receiving psychiatric assessment! I was held on the emergency unit for three days and slept on a trauma bed/table. As the feeling slowly and painfully returned to my right side I was conscious of a disregard of my medical condition and discharged myself. It was a devastating and humiliating experience made worse by my doctors working diagnosis.

Over the last year I have tried to think positively and work constructively with the conversion theory and have seen both psychologists and psychiatrists however, they are unconvinced that I have conversion disorder since my health continues to deteriorate. In fact it was my psycharistist who ordered a new neurological consult.

After much persuasion I had my visual evoked potentials tested which revealed that I had in fact had an episode of optic neuritis and the report noted moderate injury to the right optic nerve. My MRI in october 2011 reported two white spots on the brain but no new developments. So what am I to think.

My doctor is still convinced my symptoms are all part of conversion disorder but I have my doubts.

The last year has been the most difficult years of my life because of this working diagnosis. It has resulted in ongoing retraumatization and the feeling that I am locked into a diagnosis that keeps me from all other possibilities. While nobody wants MS...it is worse to be trapped in this no mans land.

Hey, folks so sorry for the HUGE introduction but it's been one heck of a journey so far and I really would like to hear your thoughts and suggestions.

Thanks
Sarah
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NHE
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Re: Conversion disorder vs MS

Post by NHE »

Crispy,
Welcome to ThisIsMS. I believe that you will find a supportive community here. I had never heard of conversion disorder before, but I found a good article on it from the Mayo Clinic. The way it reads, anyone with MS-like symptoms could be diagnosed with this. :roll: There was one thing though, the article noted that conversion disorder symptoms often get better on their own. From what you describe, your symptoms are not and seem classic for MS relapses. However, I'm not a doctor so it would be probably be good for you to find a new doctor who's willing to look outside the box that others have put you in so you can find out what's really going on.

NHE
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bartman
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Re: Conversion disorder vs MS

Post by bartman »

Sarah,
Your story is exactly like my cousins, who was misdiagnosed with ms for 13 years before we discovered he had bartonella, babesia and Lyme. If I were you I would seek out an llmd. Then I would educate yourself on Lyme disease and how it's the biggest controversy in the history of medicine. Then I would start treating bartonella with either minocycline, bactrim ds, zithromax, levaquin, rifampin or a combination of two. You really need a Lyme literate doctor ..llmd. Once you start suppressing your body with ms drugs you make a very difficult disease much much harder to treat. Be patient, learn what a herxheimer reaction is. FYI, conversion disorder the initial diagnosis for the 12 girls in up state ny has now been changed to pandas with strep and mycoplasma in 8 of them. Check out dr. Burrascanos guidelines and research idsa vs ilads.
Good luck I hope you take my advice
want2bike
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Re: Conversion disorder vs MS

Post by want2bike »

You need to find a Doctor like Mark Hyman. You might want to check out the section on Diet. It will give you information on how to treat all disease. A good diet helps with everything.

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lyndacarol
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Re: Conversion disorder vs MS

Post by lyndacarol »

Sarah – welcome to ThisIsMS. This group will help you in any way we can; for the most part, we are not medical professionals, but we will share our experiences and answer your questions as best we can. We are a group of unique individuals, each with our unique ideas. We often do not agree in these ideas, but we try to be respectful of the differences.

I do agree with NHE and want2bike and their recommendation to find a new doctor and start over. I do not think Functional Medicine practitioners are common yet, but they are just what we all need and will certainly be the wave of the future. Find a compassionate GP or internist – someone you are comfortable working with – someone who is willing to be on your "team."

My current personal suspicion is that visceral fat (internal fat around the organs) secretes cytokines which affect organs, such as liver and pancreas, to function incorrectly (and in the case of the pancreas, to produce excess insulin; in the case of liver, metabolic problems result); excess insulin promotes inflammation; inflammation results in more visceral fat. Round and round the cycle goes. Diet and exercise are probably the most effective at interrupting the cycle.

All the best to you in your journey; you have friends at this site.
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?"
Realitycheck
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Re: Conversion disorder vs MS

Post by Realitycheck »

First of all, I am new to this site and this is a really old post. The motto of this site is "an unbiased multiple sclerosis community" so here goes....

Really?

Sarah gets on here, who apparently has had crappy medical care, pours her heart out about how her life is ruined and the the best advice you have for her is to go on a diet? How do you know she was eating poorly to begin with?

Sarah, wherever you are, I am sending you hugs and positive thoughts and I hope the last couple messages didn't completely discourage you.

How could a doctor label you with conversion disorder without running one actual test? My first symptoms were numbness in my left ring finger and pinky that ran down my arm. I googled it. Google said it was cubital tunnel disease and see a neurologist--since I don't have a primary care dr (maybe this is what saved me!), I went online to my insurance company's website and I picked a neurologist. Turns out I had MS (but that was after many tests and 11 months).

Back to healthy diets, they are fantastic! I have two of Mark Hyman's books (The Blood Sugar Solution and the cookbook that goes with it). I followed this diet religiously for the summer of 2012 and still adhere to many of the principles today. Guess what? I still got optic neuritis that December. Diets are awesome, but they aren't everything. You need real medical care and possibly real medicine.

I found this thread because I googled Somatoform disease and MS because Somatoform disease is in the news a lot lately because of that teenager in Mass who her parents think has mitochondrial disease and I realized the symptoms were a lot like MS....and what I saw here moved me to register for this forum.....

To the posters on this thread, I'm sure this will read as disrespectful and for that I am sorry. But really...REALLY?!? Do I dare read other posts on this site?
Anonymoose
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Re: Conversion disorder vs MS

Post by Anonymoose »

Realitycheck,

We all have our own areas of focus and we tend to post about things we have found success with or things we have studied up on. (And in my case, at least, lots of ideas that failed!) None of us could possibly learn everything there is to know about ms so it's actually a good thing that we each specialize on our own things and share ideas for others to consider. That said, the OP was offered more than advice on diet. Furthermore, she did not have an official diagnosis of ms so references to diet were likely most appropriate anyway.

I do hope you stick around and read a bit more. I think you will be pleased to find a lot of food for thought that isn't about food. :)
want2bike
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Re: Conversion disorder vs MS

Post by want2bike »

Here some information which is not about food. Doctors were the third leading cause of death in the USA in 2000. Most of this was due to the drugs they prescribe. Going to the our medical system can have hazardous results. You already have a doctor. It is called your immune system. You give it the vitamins and minerals it needs it will make you well. We get these vitamins and minerals from the food we eat. Eating the right food is pretty important if you want the doctor from within to do it's job.

http://www.healingdaily.com/Doctors-Are ... the-US.htm

nlminstl
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Re: Conversion disorder vs MS

Post by nlminstl »

I think I have finally found a group wherected people will understand what I am dealing with.
In 08 I was diagnosed with fibromyalgia with zero testing to eliminate anything else. As the years progressed I would have bone pain and muscle pain my spine would kill me especially the time spine.
Over the years I have had issues with my speach, memory and balance. There were days when I would have numbers and tingling to feeling good a burning searing pain in my body. Heat knocks me on my ass! I have vitamin D and b12 deficiency along with optical neuritis. As well as bladder and bowel issues.Recently
I started to have convulsions with complete lefts ides paralysis which over time gets better, I am constantly exhausted there are days I walk like I am drunkard I can't stand with my feet together with out falling backwards. I havery one active lesion and what appears to be on e old one. They have only done the MRI without contrast and have never done any imagine of my time spine where the pain. Is the worst. Since 2012 my pop and a therapist have billed my insurance company with Ms symptoms of the leg yet she keeps saying I don't have it. I am now on my 3rd neurologist that says I have conversion yet no one is running any tests to eliminate anything else. I am just not buying the conversion diagnosis and I am,at a loss of what else to do
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lyndacarol
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Re: Conversion disorder vs MS

Post by lyndacarol »

nlminstl wrote:I think I have finally found a group wherected people will understand what I am dealing with.
In 08 I was diagnosed with fibromyalgia with zero testing to eliminate anything else. As the years progressed I would have bone pain and muscle pain my spine would kill me especially the time spine.
Over the years I have had issues with my speach, memory and balance. There were days when I would have numbers and tingling to feeling good a burning searing pain in my body. Heat knocks me on my ass! I have vitamin D and b12 deficiency along with optical neuritis. As well as bladder and bowel issues.Recently
I started to have convulsions with complete lefts ides paralysis which over time gets better, I am constantly exhausted there are days I walk like I am drunkard I can't stand with my feet together with out falling backwards. I havery one active lesion and what appears to be on e old one. They have only done the MRI without contrast and have never done any imagine of my time spine where the pain. Is the worst. Since 2012 my pop and a therapist have billed my insurance company with Ms symptoms of the leg yet she keeps saying I don't have it. I am now on my 3rd neurologist that says I have conversion yet no one is running any tests to eliminate anything else. I am just not buying the conversion diagnosis and I am,at a loss of what else to do
Welcome to ThisIsMS, nlminstl.

It is most unfortunate that when you were diagnosed with fibromyalgia, no testing was done to rule out any other possibilities. Please insist that your new, 3rd neurologist be more thorough with testing – things change over the years, new and different problems can develop at any time. If you are in St. Louis, vitamin D cannot be made in your skin from the sun's rays 6 months of the year, even if you work outside; and if you are inside, NO vitamin D can be made at all. Dietary sources of D are not adequate.

You mentioned that you have vitamin D deficiency (your symptoms are consistent with this condition) – I am curious to know the actual test result number for your vitamin D level. Please realize that a vitamin D deficiency cannot be corrected overnight; since vitamin D is used by all the systems in the body, it will take time to repair the affected system once the D has been raised to the optimal level and maintained there. (Your GP should monitor it regularly with a test at least every 6 months.)

MS patients are known to have low levels of nutrients, like vitamin D, B12, magnesium, zinc; perhaps it is the same with fibromyalgia. It seems logical to me that these things should be checked out. Your symptoms are also consistent with a vitamin B12 deficiency.

It is my opinion that you know your body best – if you don't feel comfortable with the "conversion disorder" diagnosis, find and work with a GP who enjoys being a "disease detective."
AprilG1961
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Re: Conversion disorder vs MS

Post by AprilG1961 »

I was reading the posts regarding conversion disorder. I was diagnosed with MS in 1994 after having dozens of MRIs since 1994 so we're talking about more than 20 years I have tons of plaque all over my spinal cord and brain and yet when I had to go to the emergency room three months ago because I fell out of bed and could not get back up to my feet and had to call an ambulance the doctor at the ER diag me with conversion disorder not multiple sclerosis this is the same doctor I saw when I moved to town to get an idea of what I could do to help my MS condition and he diagnosed me not with MS but with obesity. I have not been able to walk on my own for the last year so now I use a walker but even then it's becoming difficult so I understand that I'm gaining weight because I'm not moving as much as I should but it's hard to move when everything around you is spinning all the time falling has become an every day occurrence several times a day thank goodness I went to the emergency room the ambulance drivers noted that I had a very high fever 105 don't really have any symptoms when I have a fever I can't feel it so when They took my temperatbure on the way to the hospital they noted it was 105 brought me into the ER the doctor there diagnosed me later with a severe infection that was systemic throughout my body got me on lots of antibiotics complained about the # of medical records that were sent to him that there were so many and diagnosed me with conversion disorder.
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lyndacarol
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Re: Conversion disorder vs MS

Post by lyndacarol »

AprilG1961 wrote:I was diagnosed with MS in 1994 after having dozens of MRIs since 1994 so we're talking about more than 20 years I have tons of plaque all over my spinal cord and brain and yet when I had to go to the emergency room three months ago because I fell out of bed and could not get back up to my feet and had to call an ambulance the doctor at the ER diag me with conversion disorder not multiple sclerosis this is the same doctor I saw when I moved to town to get an idea of what I could do to help my MS condition and he diagnosed me not with MS but with obesity. I have not been able to walk on my own for the last year so now I use a walker but even then it's becoming difficult so I understand that I'm gaining weight because I'm not moving as much as I should but it's hard to move when everything around you is spinning all the time falling has become an every day occurrence several times a day thank goodness I went to the emergency room the ambulance drivers noted that I had a very high fever 105 don't really have any symptoms when I have a fever I can't feel it so when They took my temperatbure on the way to the hospital they noted it was 105 brought me into the ER the doctor there diagnosed me later with a severe infection that was systemic throughout my body got me on lots of antibiotics complained about the # of medical records that were sent to him that there were so many and diagnosed me with conversion disorder.
Welcome to ThisIsMS, AprilG1961.

Not every symptom has the same cause. Many of your symptoms could be connected to vitamin D deficiency (obesity, dizziness, muscle weakness, falling).

If you have not had the vitamin D blood test called "25-hydroxy D," please ask your GP for this simple, inexpensive test. Be sure to ask for your own copy of the test results so that you have the actual numbers.

In my opinion, it is worthwhile to know your vitamin D status; it may lead to treatment that might improve some of your symptoms.
AprilG1961
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Re: Conversion disorder vs MS

Post by AprilG1961 »

I am currently taking vitamin D three 2000 mg tablets I take 8000 mg a day and that has been for the last year prior to that I was on 800 mg a day for the last six years all of the symptoms are brand-new and I've been on vitamin D for the entire time I've just increased it
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jimmylegs
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Re: Conversion disorder vs MS

Post by jimmylegs »

that's what 320 million IU of d3 per day? that might be your problem. jk i am going to assume you mean 8000 IU per day. can you share your full supplement regimen? including how long since increasing daily d3 intake?
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AprilG1961
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Re: Conversion disorder vs MS

Post by AprilG1961 »

I apologize yes 8000 IU per day my other regimen regarding supplements is a baby aspirin once a day and that would be all I'm not on any kind of MS treatment at this timealso increase from 200800 Iu to 8000 iu has only been 3 months. i increased the D after being released from hospital after having fever of 105/fall/systemic infection
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