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Thread: I'm new......I need some help!

  1. #1

    I'm new......I need some help!

    I fortunately found this site, and hopefully you all can help me find some answers. Unfortunately, this has become a long story.....so please be patient.

    I was a professional tennis player before I became a sports Chiropractor. I have been practicing for 22 years. Over the last 10 years I have been a competitive triathlete....until 4 years ago....

    In February 2003, I was racing in a triathlon. During the run portion of the event I stepped in a hole with the left foot and twisted the ankle. Instead of retiring from the race, I completed it. By the time I completed the run I was dragging my right leg.

    After giving myself 2-3 days of rest I resumed training (this is my normal training practice). My post accident training was good, but not as good as it had been prior to the fall. My running was slightly slower, and over the course of the next several months I continued to train and race. The only remarkable finding was that during some runs, my right foot would catch the ground and I would trip and fall. This would occur approximately once every 4-6 weeks.

    During the summer of 2003, my fiancée and I participated in a biking holiday in Italy. During one of the rides I developed a peculiar pulsating sensation in the area of my left gluteal region. The sensation is not constant, but when it occurs it pulsates for approximately 2-5 seconds and recurs every 20 seconds. There doesn’t seem to be a pattern to its occurrence. This has continued to this day. It seems to be somewhat positional, as its occurrence would increase when I would run and flex my head on my neck and turn the head to either side. There is associated neck stiffness. These symptoms continue to this date. Over the last 6 months the pulsations have progressed to a sharp pain.

    Over the course of the next 6-8 months I noticed that my right hip flexor was getting slightly weaker. The speed of my cycling was decreasing, as was my swim. My average cycling speed was previously 20-22 MPH. It has decreased to around 14 MPH. Whereas, I used to be able to swim several miles at approximately 30 minutes/mile, after approximately ¼ mile my rear end would begin to lose power and sink. Today, I use a floatation device to keep my legs up.

    In August of 2004, I suffered a cycling accident. I went down on my left side. I hit the left side of my head on the pavement, breaking the helmet. I did not lose consciousness. After that day, the weakness of the right leg began to get progressively worse. I had ordered an MRI of my C, T and L spine. The results of which were unremarkable, other than some mild lumbar disc protrusions.

    In September of 2004 I consulted with Dr. Sivakumar, MD, a Phoenix neurologist. After a brief consult he diagnosed HSP, and claimed that he would confirm it with a ‘simple’ blood test. After the DNA study returned with negative results, I never heard from him again. He had also performed an EMG study on my lower extremities. These texts were negative.

    In December of 2004, I consulted with Terry Fife, MD. He suspected that I might be suffering from MS and ordered a brain and T-spine MRI. The T-spine was unremarkable, but the brain showed “3-4 areas of possible demyelization, but were inactive”. These areas were suggestive of MS, but not diagnostic. As the MRI was inconclusive, Dr. Fife took some CSF for analysis. This turned out to be negative.

    He ordered 3 days of IV steroids to see if I would respond. I did, but the improvement lasted only about one week.

    I was recommended to an MD/naturopath, who after seeing me and testing me for heavy metal toxicity (which was positive for lead and mercury), put me on a course of oral chelation. The levels came down and my condition improved only slightly.

    Over the course of the next several months, my condition did not improved and has even gotten worse to the point of having to use a cane to get around in public. Dr Fife has prescribed low doses of Valium and baclophen to help with the muscle spasms. These have not been of much help. Dr. Fife is currently testing me for various lymphomas and other conditions, which seem like a long shot, but I believe that he is stumped as to an accurate diagnosis and treatment. These tests have now also returned negative.

    Dr. Fife’s latest theory was that I might be suffering from hypothyroidism, although I have not experienced any weight gain. At first this seemed like a long shot, but my sister was diagnosed with the condition last year. She also has no weight gain. The tests were negative.

    In November of 2005 I consulted with MS specialist, Barbara Geiser, MD at UCLA medical center. She felt 95% certain that I have MS, even though there are no real positive findings.

    Follow up MRI studies have shown no change, in fact the previous ‘suspect’ lesions were not visualized. I have since had both auditory and visual evoked potential tests. These tests showed some deviation from normal, but were within normal limits.

    In January of 2006 I had another treatment of IV steroids. This time there was no real response to treatment. The only therapy that seems to help me at all is exercise. I still cycle, swim and water run. The swimming and the water running have the best response. I can be relatively good for 1-4 hours, after a pool workout. Fortunately, my practice centers on rehab, and weight loss, and we have a complete facility, including a pool. The joke around here is that I need to grow some gills!

    The only possible previous episode of neurological symptoms, which may be related to this, is approximately 10 years ago I developed a visual disturbance in my left eye. The center of my visual field became slightly blurred, affecting my depth perception. I sought the care of several ophthalmologists, none of whom could find any problems. Approximately 7 months after the symptoms appeared, they vanished and have never returned.

    In February of 2006 I decided to run tests for Lyme disease. The initial tests returned a positive RPR. Subsequent specific tests for lyme were negative, as were FTA-Ab.

    I consulted with an infectious disease MD that reviewed my records and proclaimed that I did not have an infectious disease and that I should seek another neurological opinion and that if they can’t find anything the symptoms may be “in my head”. Needless to say, I was fairly angry about that ‘opinion’. Upon further review of my past records, I found the CSF results from 1/05, and they showed an abnormally elevated WBC, lymphocyte count and Ig-G, which leads me more towards some sort of infection.

    I have consulted with a lyme disease specialist in New Jersey (Andrea Gaito, MD) who put me through more extensive lyme disease testing, which came back, equivocally positive. Because it was borderline positive she requested that I redo a lumbar MRI and EMG studies of my legs. Both of which have come back negative. However the doctor who did the EMG felt that I might have an upper motor neuron problem like Hereditary Spastic Paraparsys. Even though I have no family history and I have had negative serological DNA testing for this condition. Dr Gaito, now wants me to consult with another neurologist before she starts lyme treatment, where previously she wanted negative results on the MRI and EMG.

    I was on IV antibiotics for 3 months. After the protocol was complete, I had no evidence of Lyme disease. Even though the Lyme tests were negative, my condition is getting worse.

    I subsequently consulted (1/2007) with Stephen Fry, MD, who believes that there are some co-infections in addition to the lyme disease that are causing the symptoms. He tested me for babisiosis and bartonella, which came back positive. He is currently treating me with oral antibiotics for these bacteria. It has been almost 4 months and the symptoms have not improved and may be slightly worse.

    I am now thinking of seeing Geeta Shroff for stem cell therapy.

    I am sorry for the length of this story, and if you have gotten this far, I thank you for listening. If any of you have heard of anything similar, or know of a doctor who may be able to help me, I would be most greatfull.

    Thank you.

    Dr Dean
    www.triforlife.net
    Last edited by Rascasse; 05-01-2007 at 12:19 AM.

  2. #2
    If the diagnosis of MS appears to be most likely, have you been advised about starting one of the CRABs (Copaxone, Rebif, Avonex, or Betaseron) or Tysabri?

    It appears you have been through all the other tests to rule out the most likely other causes. I will let Dr. Young comment further.

    (KLD)

  3. #3
    You mentioned the IgG in your spinal fluid. I think those are considered markers for MS these days.

    Hope you get answers soon.

  4. #4
    Quote Originally Posted by SCI-Nurse
    If the diagnosis of MS appears to be most likely, have you been advised about starting one of the CRABs (Copaxone, Rebif, Avonex, or Betaseron) or Tysabri?

    It appears you have been through all the other tests to rule out the most likely other causes. I will let Dr. Young comment further.

    (KLD)
    Thanks for your response. That's kind of the point.....nobody really wants to make a dx and do anything. There is really a lack of objective MRI evidence to confirm MS. There is a band here, and there, but I am told that these could be present in the normal population. There are eviquivacol lyme positves. Solid babeseosis positives. The doctor who got that positive is sure that is what is causing the symptoms.

    The neurologists that I have seen have been uncaring, inactive and basically ineffective.

    For all the grief from the neurologists that I have gotten over the years, slamming my profession, I would have thought that they would be all over the science, the knowledge, treatment and cure. Or at the bare minimum, actually pretend that they care.

    Again......any help would be greatly appreciated.

  5. #5
    You might want to check out the "Good Docs" section of www.clams.org An MS Center is also a good route for finding an interdisciplinary team that specializes in MS (including making the diagnosis).

    Also, consider discussing the criteria for a MS diagnosis that the neurologist is using with them. Some are very strict about the recognized criteria, others are not. You will find a lot of people in MS "limbo" who are being treated for MS presumptively, even if they do not fit the strict criteria.

    McDonald MS Diagnostic Criteria

    (KLD)

  6. #6
    Rascasse,

    First, I want to say that I believe that something is going on. The problem is what and whether any therapy would be helpful. There are many neurological conditions for which there are no names and also no treatment.

    The diagnosis of multiple sclerosis seems unlikely, given your description of the course of your condition. Although MS is sometimes known as the great mimicker of neurological conditions and diagnosis is often difficult in the early phases, it usually doesn't have the course that you describe. Believe me, it is not a diagnosis that you want to have.

    I doubt the diagnosis of hereditary spastic paraplegia. Likewise, I am skeptical that that the various neurological problems that you have been having can or should be attributed to a single cause. You have now received the easy to give therapies such as anti-inflammatory glucocorticoids and antibiotics.

    The number of non-invasive therapies are becoming more limited. Most of the MS therapies are really aimed at preventing further loss rather than restoring function that have been lost. The only exception is fampridine, a drug that improved conduction through demyelinated axons.

    In my opinion, you should not consider Geeta Shroff because it is unlikely that she is injecting embryonic stem cells or even know what she is injecting. Worse, based on what I have seen so far, I don't think that she knows very much about the central nervous system.

    Wise.

  7. #7
    Super Moderator Sue Pendleton's Avatar
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    Ras, Sorry I haven't been online for the last day or so. Let me go through the lists I have from the Rare Immunological Conditions and see if any comes close to hitting your symptoms. Having met someone with HSP I doubt it too. MS is KLD's territory and I agree with Wise that it's not in your head but it's something. The IGg and banding rings a bell but I can't think of why. And please, if you want to discuss embryonic stem cells call Dr Doug Kerr at Hopkins or Dr Hans Kiersted at UC-Irvine. They are probably the closest to using them in people with SCI, stable spine problems and autoimmune diseases.

    Just to get this clear: you sprained your left foot/ankle and your right leg then lost strength? And when you had the visual problem, any headaches or aura's? No temporary, even for a few seconds blindness in either eye? Any fatigue not tied to tests or your training schedule? And once again to be clear--I am not a medical professional of any kind, not a RN, MD or even a chiropractor. :-) Just have collected an amazing amount of material on why healthy people suddenly become paralyzed and on a vent in 3 hours. If you haven't checked out NORD you should (National Organization of Rare Disorders about 400 are listed).
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  8. #8

    oh my goodness my husband is going through the same thing

    We are now at Dr.Fry's awaiting lab results after 4 years of every step you took, the difference being he is under the care of a rheumatologist and was on steroids for two years out of desperation to reduce his symptoms. Is your CK elevated? We've seen Jeffrey Steiers, Neurologist, Todd Levine, Neurologist (who suggested he's fine but "depressed")
    an Infectious Disease Specialist, waiting for an apt to see SivaKumar this week. He shows lowered immune bands as well and CK levels that have gone into the 900's. He's had two muscle biopsies, brain scans, emgs, cytoscans, spinal tap. You name it he's had it done the last 4 years. Dr. Fry told us he wouldn't see any improvements for possibly 6 months because he's that sick. He's also go bad cognitive deficiencies. Obviously you do not. Do you have night sweats or muscle and joint pain?
    Last edited by Diane in Arizona; 06-10-2007 at 10:44 PM.

  9. #9
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    You have had more tests, seen better doctors, and know much more than I, so I will offer only the best of wishes and my observations, fwiw, that I also have been at this for years, and:

    1. I’ve never met a neurologist not eager to just diagnose MS and be done if (s)he could make any case at all;
    2. I’ve never had a radiologist fail to see MS lesions if told to look for them;
    3. I’ve never had a radiologist see MS lesions WITHOUT explicitly being told to look for them;
    4. My symptoms improved dramatically after cervical decompression surgery;
    5. I got incredibly worse with new symptoms after trauma to my neck and low back in a fall, which I and doctors think injured my cervical cord; and
    6. I now can identify a very clear correlation between mechanical cervical things and my symptoms, and know that my cord itself since falling is sensitive and easily affected by mechanical influences. For example, since falling my hands get weak with flexion, and a CT in flexion and extension landed me in the hospital overnight.
    7. I was told they could definitively rule out Lyme's, despite equivocal blood results, on tthe basis of not finding it in my spinal fluid. Though that was 17 (ouch!) years ago.

    I so hope you can find someone who can help you. Please keep us posted.
    Last edited by Random; 06-15-2007 at 01:49 AM.

  10. #10
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    Sorry, don't know what happened here.
    Last edited by Random; 06-15-2007 at 02:38 AM.

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