Seeking differential diagnosis and opinions
Posted: Mon Dec 29, 2014 7:08 pm
I received an MS diagnosis 20 years ago. Whenever I consult a medical professional and tell them the initial diagnosis their eyes "glaze over" and they never look any further.
My history is given below. Your thoughts would be much appreciated.
HEALTH HISTORY
46 year old male, 184 cm tall, 71 kg.
Family history – Parent with Fibromyalgia.
1988: Epstein-Barr virus at age 20.
1994: I was holidaying in a warm and humid climate. During the holiday my vision suddenly went yellow and very blurred. I spent the next two days in bed with flu like symptoms. I recovered but whenever my body temperature increased my vision went blurry. No other indications. I recall that in the months leading up to the holiday, there was a twitch under one of my eyes.
1995: Consulted a Neurologist who did the usual physical /examinations – reflexes, sensation, auditory responses, visual etc. No spinal tap. A MRI was also done of the brain. It showed multiple small lesions in the brain. The Neurologist concluded that there was a multifocal CNS disease pattern consistent with Multiple Sclerosis. He thought that was the correct label for now and that no further investigation would be expected to lead to anything practical. He also stated that I had Optic Neuritis, Uhthoff’s effect and delayed auditory responses.
I understood that I had Relapsing Remitting MS.
1997/98: Another holiday in a warm and humid climate. After 4 days my walking became difficult. That night I could not bear my weight upon standing and fell. I woke durimg the night and the room appeared to be spinning. That has not happened again. I spent the next 3 days in bed feeling unwell. I had no noticeable changes or new symptoms after this “episode”.
Commenced on a course of Interferon beta. After 6 months an anti-bodies test was performed. To remain taking the drug the anti-bodies needed to be 1,000 or less. Mine was at 10000. Thus I ceased the Interferon and started o n Copaxone for a few months. Then I was recommenced on Interferon, as the anti-body test was removed. After a few months I ceased all drugs, as I felt there were no benefits.
At this stage I was walking with a slight limp and could not run. I had previously led a very active life. I continued working full-time in a stressful job.
2003: Ceased working and commenced a Paleo/Swank diet. Over the last 12 years I have taken vitamins/minerals and other supplements. By 2003 my limp had worsened, I was still walking without assistance. I had fatigue daily. Spastic bladder. I started physiotherapy and going to the gym.
2006: Hospitalized due to Uhthoff’s effect. Given saline IV and 5 days of Methylprednisolone IV. Saline effect - dramatic improvement. Methylprednisolone effect – none.
2008: I started using a walking frame. I also saw a new Neurologist who made the following comments:
- That my level of disability was greater than what he would expect given the number of lesions.
- That I had never had an episode and previous “episodes” could be attributed to Uhthoff’s effect. The “episodes” in 1994 and 1997/98 had not lasted long enough (only 2 or 3 days). Thus it would appear I had Primary Progressive MS.
Over the years I have had multiple MRIs. The number of lesions has remained stable. There have been new lesions but old lesions have healed. There has been a very gradual worsening of symptoms over time.
2012: Volvulus operation to remove 9 inches of bowel. The removed bowel already showed signs of cell death. Very mild discomfort periodically experienced occasionally for many years. Prior to operating pain levels 2 or 3/10. After operating I only took Panadol.
2013: Hair Mineral Analysis test. The test revealed many mineral levels were low. The only toxic metal which showed was aluminium, which was high.
Consulted a Gastroenterologist regarding Fecal Matter Transplant. He started me on a course of Vancomycin and Rifaximin for chronic constipation. The day after commencing the medication, the effect was dramatic – defecating several times a day with ease. I continued the anti-biotics for 2 months.
Then I saw an Integrated Doctor, who interpreted the hair test – likely heavy metal toxicity. I did a 24 hour urine test whilst taking DMSA 100 orally. A spot urine test was also done. The 24 hour test revealed high levels of aluminium, arsenic, lead, mercury and nickel. The spot test showed that I was not eliminating heavy metals.
3 mercury dental amalgams removed.
After taking DMSA 100 periodically for 18 months, the 3rd test showed that aluminium was not detectable, arsenic was at safe levels, lead had halved but was still at unsafe levels, mercury had increased slightly, nickel had increased and now thallium was high. I will continue chelating using Zeolite, cysteine, alpha lipoic acid, chlorella etc.
Towards the end of 2013 I consulted another Gastroenterologist. He performed an endoscopy and a colonoscopy. Results - 1 polyp removed, 2 haemorrhoids and eosinophilic esophagitis.
2014: Neurologist consultation and MRI of brain and spine. No changes to number/size of lesions. No atrophy of the brain – which the Neurologist thought there would have been.
12 months after initial Gastroenterologist consultation – underwent FMT. Cured chronic constipation. No other symptom changes.
Influenza A – lased 6 days.
I often feel dehydrated, even though I drink 2.5 litres of water a day. Dry skin. Urine is a level 3 or 4 on the Urine Hydration chart – borderline dehydrated.
Amino acids were tested - virtually all were low except GABA and 1 methylhistadine. Have increased protein intake.
Other tests done:
- Liver/kidney function, heart rate, blood pressure, blood oxygen – always normal.
- Cholesterol - LDL high
- Blood sugar – normal
- Red cell folate – normal
- Plasma homocysteine - normal
- Ceruloplasmin serum – normal
- Blood group – A
- Testosterone – low
- Cortisol random – normal
- ESR- normal
- Low C-reactive protein - normal
- Celiac disease – no
- Helicobacter bacteria, Borella, Chlamydophila pneumonia, Adenovirus, Parainfluenza - all negative
- Vitamin D – normal
- Vitamin B12 – normal
The progression of the disease has been very slow over 20 years. I am now in a wheelchair and have been for 2 years. I have lost upper body strength and muscle.
My history is given below. Your thoughts would be much appreciated.
HEALTH HISTORY
46 year old male, 184 cm tall, 71 kg.
Family history – Parent with Fibromyalgia.
1988: Epstein-Barr virus at age 20.
1994: I was holidaying in a warm and humid climate. During the holiday my vision suddenly went yellow and very blurred. I spent the next two days in bed with flu like symptoms. I recovered but whenever my body temperature increased my vision went blurry. No other indications. I recall that in the months leading up to the holiday, there was a twitch under one of my eyes.
1995: Consulted a Neurologist who did the usual physical /examinations – reflexes, sensation, auditory responses, visual etc. No spinal tap. A MRI was also done of the brain. It showed multiple small lesions in the brain. The Neurologist concluded that there was a multifocal CNS disease pattern consistent with Multiple Sclerosis. He thought that was the correct label for now and that no further investigation would be expected to lead to anything practical. He also stated that I had Optic Neuritis, Uhthoff’s effect and delayed auditory responses.
I understood that I had Relapsing Remitting MS.
1997/98: Another holiday in a warm and humid climate. After 4 days my walking became difficult. That night I could not bear my weight upon standing and fell. I woke durimg the night and the room appeared to be spinning. That has not happened again. I spent the next 3 days in bed feeling unwell. I had no noticeable changes or new symptoms after this “episode”.
Commenced on a course of Interferon beta. After 6 months an anti-bodies test was performed. To remain taking the drug the anti-bodies needed to be 1,000 or less. Mine was at 10000. Thus I ceased the Interferon and started o n Copaxone for a few months. Then I was recommenced on Interferon, as the anti-body test was removed. After a few months I ceased all drugs, as I felt there were no benefits.
At this stage I was walking with a slight limp and could not run. I had previously led a very active life. I continued working full-time in a stressful job.
2003: Ceased working and commenced a Paleo/Swank diet. Over the last 12 years I have taken vitamins/minerals and other supplements. By 2003 my limp had worsened, I was still walking without assistance. I had fatigue daily. Spastic bladder. I started physiotherapy and going to the gym.
2006: Hospitalized due to Uhthoff’s effect. Given saline IV and 5 days of Methylprednisolone IV. Saline effect - dramatic improvement. Methylprednisolone effect – none.
2008: I started using a walking frame. I also saw a new Neurologist who made the following comments:
- That my level of disability was greater than what he would expect given the number of lesions.
- That I had never had an episode and previous “episodes” could be attributed to Uhthoff’s effect. The “episodes” in 1994 and 1997/98 had not lasted long enough (only 2 or 3 days). Thus it would appear I had Primary Progressive MS.
Over the years I have had multiple MRIs. The number of lesions has remained stable. There have been new lesions but old lesions have healed. There has been a very gradual worsening of symptoms over time.
2012: Volvulus operation to remove 9 inches of bowel. The removed bowel already showed signs of cell death. Very mild discomfort periodically experienced occasionally for many years. Prior to operating pain levels 2 or 3/10. After operating I only took Panadol.
2013: Hair Mineral Analysis test. The test revealed many mineral levels were low. The only toxic metal which showed was aluminium, which was high.
Consulted a Gastroenterologist regarding Fecal Matter Transplant. He started me on a course of Vancomycin and Rifaximin for chronic constipation. The day after commencing the medication, the effect was dramatic – defecating several times a day with ease. I continued the anti-biotics for 2 months.
Then I saw an Integrated Doctor, who interpreted the hair test – likely heavy metal toxicity. I did a 24 hour urine test whilst taking DMSA 100 orally. A spot urine test was also done. The 24 hour test revealed high levels of aluminium, arsenic, lead, mercury and nickel. The spot test showed that I was not eliminating heavy metals.
3 mercury dental amalgams removed.
After taking DMSA 100 periodically for 18 months, the 3rd test showed that aluminium was not detectable, arsenic was at safe levels, lead had halved but was still at unsafe levels, mercury had increased slightly, nickel had increased and now thallium was high. I will continue chelating using Zeolite, cysteine, alpha lipoic acid, chlorella etc.
Towards the end of 2013 I consulted another Gastroenterologist. He performed an endoscopy and a colonoscopy. Results - 1 polyp removed, 2 haemorrhoids and eosinophilic esophagitis.
2014: Neurologist consultation and MRI of brain and spine. No changes to number/size of lesions. No atrophy of the brain – which the Neurologist thought there would have been.
12 months after initial Gastroenterologist consultation – underwent FMT. Cured chronic constipation. No other symptom changes.
Influenza A – lased 6 days.
I often feel dehydrated, even though I drink 2.5 litres of water a day. Dry skin. Urine is a level 3 or 4 on the Urine Hydration chart – borderline dehydrated.
Amino acids were tested - virtually all were low except GABA and 1 methylhistadine. Have increased protein intake.
Other tests done:
- Liver/kidney function, heart rate, blood pressure, blood oxygen – always normal.
- Cholesterol - LDL high
- Blood sugar – normal
- Red cell folate – normal
- Plasma homocysteine - normal
- Ceruloplasmin serum – normal
- Blood group – A
- Testosterone – low
- Cortisol random – normal
- ESR- normal
- Low C-reactive protein - normal
- Celiac disease – no
- Helicobacter bacteria, Borella, Chlamydophila pneumonia, Adenovirus, Parainfluenza - all negative
- Vitamin D – normal
- Vitamin B12 – normal
The progression of the disease has been very slow over 20 years. I am now in a wheelchair and have been for 2 years. I have lost upper body strength and muscle.
