Member Interview: On Transient Migratory Osteoporosis

Pam Flores @phflores Health Guide
  • We will be interviewing one of our members from England on Transient Migratory Osteoporosis.  This is a little-known disorder that is similar to osteoporosis in some ways, but at the same time very different.  Most of us have never heard of this, even though it's been in the medical literature for quite some time. 

     

    Transient Osteoporosis is a rare self-limited syndrome characterized by sudden onset of joint pain, followed by focal osteopenia after few weeks, with spontaneous recovery.  This was first described by Revault, et al., as a distinct clinical syndrome in French literature and was thought to be due to neurotropic changes, possibly secondary to minor trauma.  The first report of this disorder in the English literature was by Curtis and Kincaid in 1959.  They described three women who developed hip pain and osteopenia in the last trimester of pregnancy.  The symptoms and radiographic changes disappeared spontaneously after several months.  Although this was the original description of the phenomenon, none of our cases included pregnant women.  By 1968, Lequesne coined the term-transient osteoporosis of the hip.  Subsequent reports described similar clinical and radiographic patterns in other locations such as the knee and ankle.

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    One of the likely explanations for the pathogenesis of TO (also known as TMO, TRMO) is perhaps that proposed by Frost and others.  He stated that under noxious tissue stimuli, the ordinary biological processes, including blood flow, cell metabolism and turnover and also tissue modeling and remodeling, might be greatly accelerated, called the Regional Acceleratory Phenomenon (RAP).  In his opinion a prolonged or exaggerated RAP in which a large number of bone turnover foci are activated, is the case of TO.  It has been hypothesized that symptoms may be related to bone marrow edema demonstrated at MRI and to a transitory regional arterial hyperflow observed at the early scintigraphic analysis.  Bone tissue micro damage is the most frequent noxious stimulus that provokes RAP and bone tissue micro fracture is the main consequence. ...The repeatedly observed histological findings in patients with TO showing mild inflammatory changes and osteoporosis, associated with and elevated bone turnover with increased bone resorption and reactive bone formation are a good description of ongoing TRMO. [1]

     

    Welcome Paul!  We are happy to be speaking with you about Transient Migratory Osteoporosis.  Your experiences with treatment, education on the topic and medical intervention to cure this, will be very enlightening and educational for those suffering with this disorder.

     

    Paul Franklins' Background:

     

                                              

     

    Before I was diagnosed with Transient Migratory Osteoporosis (TMO) the only interest I really took in health was keeping myself fit. Not like an obsession but just making sure I maintained a good weight and exercised regularly. The key to this is watching what I eat again, not obsessively just sensibly. I drink alcohol-should say drank, as I am a teetotaler at the moment-about 6 units per week on average. So on the whole prior to this I was "pretty damn healthy" so it was a bit of a shock to my youthful immortality complex ha!!! Last November I noticed a slight pain on the right side of my groin radiating up towards my hip area. I also had pain down the front of the leg towards the knee.

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    O.K., The best thing that ever happened to me was becoming a father; I take great pride in that role. I love the outdoors, the sky, the sea, trees, landscapes, the different weather conditions and how they effect what's going on around us. I enjoy all the simple things in life. I like anything that makes me smile which encompasses many things, other people's smiles, positive happy people, inspirational people, music any type as long as it's uplifting. What we see and what we hear can so lift the spirit within us. What inspires me? Other people's great strengths and achievements whilst coping with hard times, I never cease to be amazed at the stories of people coping and overcoming major trauma in their lives especially the young ones I am in awe of them all. They set a great example to us when we may be feeling a little sorry for ourselves. So that's me really.

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    Paul, can you tell us what your symptoms were that led you to get treatment for Transient Migratory Osteoporosis?  What areas of your body are involved with your disorder? 

      

    The groin area and front of the leg on my right side, only one hip is affected, within 2 weeks of onset I was virtually unable to walk without excruciating pain and severe limp.

     

    Since you live in England and have National Health Care, were you able to seek help from a specialist, and if so, what type of doctor did you look for to treat this disorder? 

     

    Initially I visited my local doctor (General Practitioner) who sent me for an x ray. The x ray did not show any abnormalities at all. The pain continued. I was now unable to attend work. I re-visited the doctor and was referred to an orthopaedic surgeon on a private basis. I had an MRI scan which showed abnormalities in the signal in my right femoral head.

     

    I understand that you were misdiagnosed, early on, and were scheduled for hip replacement due to the physician thinking you had osteonecrosis of the femoral head.  Could you explain what tests were ordered to arrive at this diagnosis?  Osteonecrosis is a disorder that kills the bone, due to poor blood supply in the area; it's also known as avascular necrosis (AVN).

     

    There were no tests carried out just a reading of the MRI scan. I was shocked to say the least to think I was going to have a hip taken out at my tender age!! 

     

    Who caught this mistake in diagnosis and how did they arrive at a correct diagnosis of TMO from the original osteonecrosis diagnosis?

     

    Well the orthopaedic surgeon sought further advice from a senior radiologist and one week before I was due to have the hip removed he phoned me with a new diagnosis of TMO. It would seem due to the nature of TMO it can be mistaken for AVN. It's very very important for anyone who thinks they may have an issue like this to ensure they see the correct specialist. I would also advice people to ask the specialist to explain in laymens' terms. Don't be afraid to challenge; there is nothing wrong with that.

     

    Did the physician order a bone biopsy or just an MRI to check for TMO? 

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    I only had an MRI for diagnosis.

     

    Do you have to use crutches due to the intense pain and lack of mobility?

     

    Oh yes crutches and walking sticks must be used at all times. This is to keep any weight/load bearing of the hip. There is a risk of fracture which would then lead to hip removal. It's frustrating but it could be a whole lot worse, on the whole I'm getting off lightly compared with lots of people.

     

    What medication is the doctor using for your osteoporosis, and is it helping your T-score?  Is the medication causing any side effects?

      

    Well medication, this was a source of immense interest on my part. I was very concerned when directed to take bisphosphonates (Fosamax®).  I could find no evidence anywhere that this medication had helped anyone with TMO. All I found was rather worrying evidence that Fosamax could be a bone hardener (leading to fractures) rather than a bone thickener. Also, there is a possible link to side effects in the gullet with this medication. I declined the Fosamax from the orthopaedic surgeon and this decision was vindicated when I later spoke with a rheumatologist. I was given Calcitonin® but had to stop this as it was causing severe headaches and nosebleeds on a regular basis (this is taken in the form of a nasal spray).

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    Did they check your T-score at the beginning of your diagnosis and treatment, and was it low?  Could you tell us what it was?  Normal bone is any score above -1.0.  Osteopenia is any score between -1.0 and -2.5.  Osteoporosis is any score below -2.5.  Severe or established osteoporosis is any score below -2.5 with previous or current fractures.  This scoring method is provided by the World Health Organization on bone mineral density scores. 

     

    No one has checked my t score; when I asked for a bone density scan I was told it wasn't really necessary.

     

    Has the doctor said this will resolve in a certain amount of time?

     

    The rheumatologist has said it's a tough it out condition which is self healing in time. The time scale given seems to vary from 3 months to 18 months. So I'm aiming for 6 months mentally.

     

    Does your family need to help you much, or are you pretty independent with TMO?

     

    It's important for me to retain my independence. My daughter has been absolutely brilliant. My wife has been very understanding also. On the odd occasion I guess I do miss my mobility and activity, so I probably get annoyed at times. I have returned to work on reduced hours at BD which has been a great help mentally. My employer has been very supportive throughout.

     

    Is there anything in particular you'd like to tell those with this disorder so it will help with their treatment?  Do you have any words of wisdom that would help to explain this disease?

     

    Don't feel sorry for yourself; remove any negative thoughts immediately; they'll start to permeate your mind, read positive literature, listen to happy uplifting music. Seek out others to speak to remember you are never ever alone with this. Focus on the end result which is complete recovery. Read about inspirational people, there are so many of them. Set yourself small attainable goals throughout your day, every day, don't drift, stay in control. Challenge your specialist, but always respectfully. Be sure you understand exactly what you are being told and why you need to take medication. You must be comfortable with everything. I chart my pain on a daily basis so I know when I am progressing and when I have gone too far. I found this website and it was the first source of information to me about TMO so thank you very, very much Pam.

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    Thank you Paul for such an illuminating explanation on Transient Migratory Osteoporosis!  Our readers will certainly gain much from your words, and advice to help them deal with this type of disorder.  This disease sounds very challenging to me, but I'm happy you were on top of the doctors during the diagnosis period.  This should be a lesson to us all; don't let a diagnosis go unchallenged, if it doesn't make sense to you.  If you hadn't had a doctor to double check your femoral head avascular necrosis, you would have had a hip replacement for nothing.  Hip surgery is very difficult even at a young age, so I'm thrilled and sure the readers are as well, that this surgery didn't take place and a correct diagnosis was reached.

     

    Good luck to you and keep us posted on your recovery.  We're so glad our original article on TMO helped you!  Thanks again; you are a terrific individual with very logical and astute beliefs that should serve you well during your recovery.

     

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Published On: February 20, 2012