Search for a Diagnosis
Family Doctor Appointment
Saturday, May 23, 2015
On May 23, I had a follow-up appointment with my family doctor. At this time, she had not received all of the tests that I had done in the hospital. She only had the blood work from May 3 and the spinal fluid report.
This was the first time I got to see the results of my bloodwork. Even though I was told everything was normal, my doctor shared the results and pointed out a few items that were a little concerning.
After, we went to Costco to get some groceries. When we got back to the car, I felt extremely tired and my body felt heavy. I could still move my fingers and wiggle my toes, but I felt physically drained.
Irregular Lab Results:
- C Reactive Protein: 19.0 (<5.0 normal)
- Extractable Nuclear: Positive
- RPN: 1.1 (<1.0 is normal)
- Sjogrens Syndrome-A: 1.7 (<1.0 is normal)
Massage Therapy Appointment
Sunday, May 24, 2015
The doctors all seem to think that stress is causing my episodes, so I made an appointment with a massage therapist to see if my body was tense. I was also hoping it would help the stiffness in my foot, which was becoming more painful.
I found the massage very relaxing. Christine said that she felt a bit of tightness in my back and shoulders, but nothing she felt was concerning. My feet were also tense. She asked if we had a look at Lyme’s Disease because the symptoms might fir. My foot didn’t feel any different after.
History of Muscle Pain
In January of 2014, I had tenderness in my calves. It was so bad in the mornings that I walked like a robot until my legs loosened up. It seemed to be worse when I sat for long periods of time.
I was eventually able to fix the problem after visiting my chiropractor and doing a few sessions of deep tissue massage therapy. The stiffness did not return until this month.
On May 27, I started mentruating. It was much heavier than normal, but nothing too alarming. However, the next day, I had periods of time when it was so heavy that I couldn’t manage it. At one point, I was sitting in a pool of blood. Then I would have nothing for several hours. I had minor spotting for the next 5 days.
Symptom:
Joints click and crack
When I walk, especially on stairs, my joints make cracking sounds all the time. I am feeling very old.
“The treatment today was a combination. Traditional massage including swedish, myofacial shearing, and neuro muscular facilitation for the musculature of your back, neck, and legs, in particular your feet and calves. I also assesed and treated your Cranial Sarai rhythym with a cranial sacral therapy basic protocol.”
Family Doctor Appointment
Monday, May 25, 2015
On May 25, I had a terrible pain in my chest when I went to bed. It was exactly the same that I experienced in my last night in the hospital. Tavis thought I was having a panic attack, but I was unaware of any stressers that could have triggered it. My episodes had subsided and I was feeling somewhat normal, other than the creaking of my joints. It lasted about 5 miutes, and seemed more manageable while I was walking. As soon as I laid down, the pain intensified. I paced around the house and it eventually went away.
Irregular Lab Results:
- C Reactive Protein: 19.0 (<5.0 normal)
- Extractable Nuclear: Positive
- RPN: 1.1 (<1.0 is normal)
- Sjogrens Syndrome-A: 1.7 (<1.0 is normal)
Symptom:
Tightness and pain in chest
- seemed more intense when I sat or laid down
- walking seemed to make it feel better
- I was still able to breathe
- it was mostly a sharp pain in my chest.
Family Doctor Follow up
Wednesday, May 27, 2015
I followed up with my doctor because I wanted to see if I had been tested for Lyme’s Disease. I also wanted to share my new symptom of chest pain.
The doctor had received all of the previous tests and printed everything out for me. She felt bad because there really wasn’t much she could do. There had been no test for Lyme’s Disease, but I could request to do it privately. I sent away for a kit.
More bloodword was ordered and I was supposed to follow up again after my appointment with the Rheumatologist.
Today, I also started mentruating. It was much heavier than normal, but nothing too alarming. However, the next day, I had periods of time when it was so heavy that I couldn’t manage it. At one point, I was sitting in a pool of blood. Then I would have nothing for several hours. I had minor spotting for the next 5 days.
Symptom:
Heavy menstrual bleeding
- Incredibly heavy on day 2
- Spotting for the next 5 days
“There is really nothing I can do for you except refer you to a Rheumatologist.”
Naturopathic Appointment
Thursday, June 4, 2015
Today I met with our Naturopath. She has successfully helped Tavis and the kids with allergies. She ran several different tests using Bioenergetic Intolerance Elimination (BIE), and discovered that my body had a reaction to vitamin B-12 and iron. She treated me with the hope that my body would better absorb these vitamins.
In the meantime, she suggested that I take supplements.
BIE Results:
- Vitamin B12
- Iron
“I recommend taking supplements for vitamin B-12 and iron.”
Rheumatologist Appointment
Monday, June 15, 2015
Today I met with Dr. Angela How. I provided a copy of all test results. She did not have a copy, and was not aware of mmy case. I gave an extensive recap on all that I had been through from the time the episodes started until now.
We went over a brief family history, and Dr. How took my vitals. She checked my mouth and eyes, then briefly examined my fingers, toes, and other joints and muscles. She found no inflammation.
She determined that I do not have an auto-immune disease and referred me back to my family doctor.
“You do not have an auto-immune disease. The pain in your toes and hands are unexplained and a Rheumatologist is not able to help diagnose these symptoms. You should see your family doctor.”
Family Doctor Follow up
Friday, June 19, 2015
Last night I had a long sleep, but I woke up feeling very tired. I did not want to get out of bed.
I had a follow up appointment with my family doctor. While in the doctor’s office, waiting for the doctor, I had another episode. I was sitting in a chair and felt my body get heavy. I laid down on the bed and couldn’t move for a few minutes. I had movement back in my limbs before the doctor appeared.
She told me there was nothing left to do and suggested that I follow up with the neurologist. From a medical point of view, there is nothing wrong.
Daily Episodes
Neurology Follow-up
Thursday, June 23, 2015
Today I followed up with Dr. Lee. He was happy to see that I was looking well. He was also glad to hear that my episodes had practically stopped. He had two suggestions on where to go from here.
- He wanted to refer me to a Rheumatologist. I had already seen one so I decided it was best not to get a second opinion.
- He wanted to refer me to sleep analysis to explore Cataplexy. I already had an appointment scheduled for November 18. He was very impressed that I had an appointment so soon.
Dr. Lee suggested that I not drive untl I was able to go 6 months without an episode, or until we figure out the cause and how to treat them.
This was my last appointment with Dr. Lee.
“I recommend that you see a Rheumatologist and go in for Sleep Analysis. In the meantime, no driving until you can go 6 months without an episode.”
A New Neurologist
August 6, 2015
A family friend knew of a neurologist who accepted patients like me who were in search of a diagnosis. Thus began a long relationship with Dr. Stowe.
Our first appointment was at the Delta hospital. We visited Dr. Stowe for almost 2 hours while he did an extensive background. He did a full neurological exam, which I passed with flying colours. Doctor Stowe also ordered several blood tests.
I began seeing Dr. Stowe regularly every 3 months. We had a follow up visit on November 3.
Sleep Analysis
December 14, 2015
On December 14, Tavis drove me to the sleep clinic in Vancouver where I was admitted for the night. They spent what seemed like hours hooking me up to hundreds of sensors. I had them attached to my head, chest, back. It was not a very comfortable experience.
The worse part was when they brought me into a room with a bed and told me to sleep. Sleeping is not something that had every been easy for me at the best of times. I am a very restless sleeper at the the best of times, so being told to lay down, and fall asleep without moving too much seemed almost impossible.
I don’t recall getting too much sleep that night. However, I must have slept enough. In the morning when Tavis came to get me they said that there was nothing abnormal about my sleep patterns.
This was the last hope we had of finding answers.
Follow-up with Dr. Stowe
January 12, 2016
It has been almost 9 months since my episodes started. I am not experiencing them every day, but they are still present. There seems to be no apparent triggers. I haven’t had any changes to my diet, and my life is fairly stress-free.
With the results back from the sleep analysis, Dr. Stowe had exhausted all tests. The only option left was to try an anti-depressant. This was the one treatment that I was determined I would only consider if nothing else worked.
Dr. Stowe prescribed Venlafaxine, an anti-depressant used to treat general anxiety disorder, social anxiety disorder, and panic attacks.
Today, I started out on a 37.5mg dose daily. After 2 weeks, I increased to 2 capsules a day. The following month I began taking 3 capsules a day.
By February, I was taking 112.5 mg of Venlafaxine per day. My episodes were still happening ocassionally. I didn’t see any difference in the number of episodes after starting the anti-depressants, but Dr. Stowe insisted that it could take months for the medication to take effect. We needed to monitor the episodes and possibly increase the dose if needed.
I followed up with Dr. Stowe again. in March to see how I was tolerating the medication. Then we continued our follow-ups every 3 months.
- Mar 10, 2016
- Jun 9, 2016
- Sep 8, 2016,
Medication:
Venlafaxine
Dosage: start at 1 37.5mg capsule daily. Slowly work up to 3 capsules daily.
Side Effects: loss of appetite, increase in activity, inability to be still, weight loss, over time, I developed a sense of not being able to focus.
“I don’t like being on Ventafaxine. It makes me feel like my head is in the fog. I can’t sit still or stay focussed on anything. I don’t feel like myself. I haven’t noticed any difference in my episodes.”
Family Doctor Follow-up
September 18, 2016
Today I followed up with my family doctor. I informed her of al the testing I had done. We also had a regular PAP. SHe went over all of me recent lab results and everything came back normal.
She informed me that my file has a diagnosis of Conversion Disorder and suggested that I stop looking for a different diagnosis. Instead, I needed to focus on removing any stressors in my life.
Diagnosis:
Conversion Disorder
(also known as functional neurological system disorder) is a condition in which a person experiences physical and sensory problems, such as paralysis, numbness, blindness, deafness or seizures, with no underlying neurologic pathology.
“You have Conversion Disorder. Several tests have been done, and every one comes back normal. Therefore there is nothing physically wrong that is causing these episodes.
Our best guess is that when your body encounters any stress, it takes over and leads to these episodes.”
Introduction to Dr. Shong
October 12, 2016
The beginning of October brought a new wave of episodes. I was currently taking 112.5 mg of Venlafaxine each day. We had a busy week with Addison’s birthday, Thanksgiving, and a KBS dinner. I started having multiple episodes a day.
On October 12, my weakness got so bad, I just couldn’t get out of bed in the morning. I asked Tavis to call Dr. Stowe to make an appointment. In the meantime, a family friend knew of a Chiropractor who has success solving other mysterious cases. We phoned and he was able to see me imediately.
On my first visit, Dr. Shong witnessed my extreme fatigue. We shared with him all of the events that led up to that moment. He tried a few different techniques, including hypnosis to try and figure out if there were any traumatic triggers that I was not aware of. He also asked to get a copy of all the MRI images so he could take a closer look at my brain.
“There doesn’t seem to be any traumatic experiences that would trigger this. It would make sense if you were in a severe accident or were dealing with severe loss or depression.
Lets take another look at your lab work and imaging. Maybe a previous injury could be causing the issue.”
Appointment with Dr. Stowe
October 13, 2016
Today I was feeling a bit better. I had an episode while waiting at the hospital to see Dr. Stowe. Tavis went to get him, but by the time Dr. Stowe arrived, I was already coming out of the episode.
During our appointment, I received a full neurological examination and everything came back normal.
We told him about Dr. Shong’s suggestion that it could be caused from the trauma I experienced as a child. This seemed extremely unlikely.
Medication:
Venlafaxine
Dosage: start at 112.5 mg (3 capsules) daily.
Side Effects: no sugar cravings, loss of appetite, sense of not being able to focus.
Follow-up with Dr. Shong
October 15, 2016
It took a few days, but I was finally able to pick up a cd with all of my images from my CT and MRI scans. I provided Dr. Shong with every test result and image that I had available. He also continued with the hypnosis treatment. During my visit I had another episode. He did basic neurology testing while I was in my episode and was very intrigued, and was determined this was not Conversion because there was no stressor that led to the episode.
We left the appointment feeling like someone actually understood.
Follow-up with Dr. Shong
November 26, 2016
I am still having episodes almost daily. Dr. Stowe increased my dose of Venlafaxine to 150 mg per day. It seems not to be making any difference.
When we went to see Dr. Shong, he pointed out a small fracture on my skull in the MRI. According to his research, there was a very small chance that scar tissue in teh brain from an injury as a child (when I fell over the railing) could be causing misfires between my brain and my muscles. He prescribed a natural ensyme called Serrepeptase, which could be purchased at any health foods store. His hope was that the ensyme could help reduce the scar damage on the skull which would also reduce the episodes.
If the Serrepeptse works, he predicted I would stop having episodes in 2 weeks.
Two weeks later, I stopped having regular episodes!
This was my last visit with Dr. Shong. I believed he cured me.
Medication:
Venlafaxine: 187.5 mg daily
(1 – 150mg and 1 – 37.5mg capsule)
Serrapeptase: 1 capsule daily
“Let’s try Serrapeptase. It is a natural enzyme that is produced within the digestive tract of silkworms. It’s a proteolytic enzyme, which means it breaks down nonliving protein tissue into amino acids.
Try taking the enzyme for 2 weeks. If it works, it should stop your episodes.”
Follow-up with Dr. Stowe
December 13, 2016
My episodes had practically stopped. I continued to have momentary periods of fatigue, but it rarely led to a full episode. Everythign seemed to finally be under control.
Dr. Stowe was convinced we had finally found the right dose of Venlafaxine. He insisted that I continue to take them regularly. I was no longer having episodes and agreed that I would continue to take the anti-depressants.
I was losing wight and looking good. I was also very active. I didn’t want the episodes to come back so I continued taking the Venlafaxine and Serrapeptase daily for over a year.
I continued with my follow-up visits with Dr. Stowe. I had another appointment April 13, 2017. I was still having 1 or 2 episodes in a 6 month period, but nothing too bad.
Medication:
Venlafaxine: 187.5 mg daily
(1 – 150mg and 1 – 37.5mg capsule)
Serrapeptase: 1 capsule daily
Follow-up with Dr. Stowe
October 26, 2017
I had gone almost a year and I only had a handful of episodes. I was ready to start tapering back my dosage. When Tavis and I inquired about going off the anti-depressant, Dr. Stowe was very nervous about the idea. He recommended that I not stop my dosage. Tavis. and I were adament that we wanted to begin lowering the dose.
Reluctantly, Dr. Stowe granted our wish and changed my prespcription back to 112.5mg per day. He cautioned me to reduce teh dosage at the sate rate as I increased it. I immediately started on a dose of 1 – 150mg capsule for the next two weeks. Then I went to 4 for the following 2 weeks, and down to 3.
Going off the medication affected me far worse than when I started. The side effects were immediate. I was sick to my stomache the first day. I slowly started to feel better over the next couple weeks. I went through the same experience each time I lowered my doseage.
I did not stop at 3 capsules. It took a couple months, but I eventually got myself completely off teh Venlafaxine.
On our next appointment with Dr. Stowe, he was surprized to hear that I was no longer taking the anti-depressant, but was happy that the episodes had not returned.
I continuted with regular follow-ups.
- May 10, 2018
- Nov 15, 2018
- Jul 11, 2019
- Sep 10, 2020
- Mar 18, 2021
- Mar 24, 2022
- Mar 23, 2023
Medication:
Venlafaxine: over 2 months, I weened myself off the antidepressant
Serrapeptase: 1 capsule daily
Going off the Venlafaxine was far more difficult than I anticipated. It took a long time because just reducing my dose by 37.5mg caused me to have severe nausea, and tiredness. I had to slowly adjust to the new dose before I could make another change.
I didn’t realize how disconnected I felt while on the drug until I had completely come off. I felt my mind was more clear and I started to feel like myself again.
The Early Stages
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The First Episode
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Royal Columbian Hospital
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Searching for a Diagnosis
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Living with Episodes
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