This Is MS Multiple Sclerosis Community: Knowledge & Support

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

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. 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

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

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.

http://www.youtube.com/watch?v=ZAhu6oa_ ... ure=relmfu

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.

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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?"