Name :     Mirko Zuglian

E-mail :

Adult:      33 years old

Location:  Sovramonte (Province of Belluno, Italy)

Area(s) affected:   Both femurs; third metatarsal bone of III toe of left foot

Personal History:

I think everything started back in 1998 when I used to play basketball and I started to feel pain in both my tibias. I underwent X-rays and I was diagnosed with tibial periostitis indeed. Then, in 2000, I started jogging, even taking part in some running races. But the pain in my shins persisted, and I noticed that if I went jogging the pain got worse, if I stopped, even just for a week, it decreased. The doctors were puzzled too by this weird periostitis that refused to get better. Nevertheless, I kept on jogging from 2000 to 2004 even if I was feeling pain in my shins. Then, a bad day early November 2004, I woke up in the morning to go jogging, and as soon as I put my socks on I felt that something was wrong, because the socks gave me a weird feeling when touching my skin (I felt my skin slightly more sensitive than usual). Then, when I put my shoes on, the feeling got even weirder.

Then I started to feel pain in one of my calf muscles, that before I had never felt, so that I had to reduce the length of my race training, until May 2005, when I definitely stopped running, because it hurt really a lot. Over time that feeling of hypersensitivity in my feet was growing stronger and I couldnít under stand what was happening to me, so I started to worry a lot. I underwent more X-rays but they found nothing but the usual periostitis in both my shins, and nothing else.

Then, in March 2006 my feet began to gave me a sensation of burning and intense heat (I think that is due to bad circulation): initially I noticed this happening once a month, then this burning and heat feeling in my feet showed up more and more frequently, until I could feel it every day. Finally in September 2006, at the hospital in Feltre (a city 20 kilometers far from where I live), a doctor, instead of doing the usual X-rays in my shins, decided that I had to undergo CT scans of both my femurs; so I had the diagnosis: Melorheostosis to both my femurs and to the third metatarsal bone of the third toe of my left foot. They told me to go to Rizzoli hospital in Bologna (a bone diseases specialized hospital) to have my diagnosis confirmed, and so it was in November 30th, 2006. They told me that the disease was not going to heal at all, that it was going to progress slowly, it was probably going to stabilise and that there was no cure (only anti-inflammatory painkillers when I felt more pain, but I took those only for a little while because I was 25 and I didnít want to ruin my liver, kidneys and stomach). Over time my feet, besides the burning and heat sensation, started to swell (I think that is due to bad circulation too) and I was feeling worse and worse when I put socks and shoes on: since March 2007 I have not worn shoes. Since March 2008 I have not worn socks too, so from that moment on I only wear plastic slippers. I only wear slippers when I go outside, when Iím home I walk barefoot to find a little relief on the cold floor.

In April 2008 I was hospitalized for a week by a head physician in Pavia, where I underwent X-rays to see if had Melorheostosis in other areas of my body, with negative result. I had a blood test too, which showed that alkaline phosphatase had wrong values. When I came back home they told me to try a drug called Etidon (biphosphonate) for three months, telling me they had cured 5 other people that had Melorheostosis, with good results. I did as they told me but after three months I couldnít see any improvement, so I decided to stop taking it.

In October 2008 I was visited by another doctor (a specialist in rare diseases) in Bergamo, who took a sample of my blood and sent it to a laboratory in Chemnitz, Germany, to verify the verify the origin of my Melorheostosis case. The result was that my case is Melorheostosis of immunological origin, in other words my immune system produces two types of interleukins (IL 2 and IL 6) in a wrong way, and that seems to be the cause of my disease. The doctor told me then to try a cytokine-based cytoplasmic therapy (which was produced for me at the Chemnitz laboratory, in Germany) : I did two cycles, in April 2009 and then in May 2010, even if they gave poor results.

In late December 2011 I met again this doctor in Milan, where he advised me to undergo a cycle of an embryonic stem cells therapy, programmed for bones, muscles and circulatory system (this therapy too was to be produced in Chemnitz). So, in March 2012 I started a stem cells therapy cycle which lasted until mid-July 2012. This therapy brought some improvement indeed, because flushing, burning and swelling in my feet decreased considerably, but hypersensitivity is the same as before. At least, since then I started to put on again the slippers when at home, even if without socks. After the stem cells therapy I lost touch with the rare disease specialist, because of some misunderstandings, so nowadays Iím not followed by any doctor for Melorheostosis.

Since mid-January 2012 anyway I had others quite weird symptoms: severe itching, sense of effervescence and tingling in my feet, legs and up to my buttocks, then luckily towards the end of September 2013 most of these disorders faded away (probably due to a homeopathic therapy that I followed for some months).

I write here the last updates: nowadays my feet flush and swell only from time to time. Then, inexplicably, since late April 2015 my right foot has suddenly become much more sensitive than my left one (before then their hypersensitivity was quite similar), with the result that my skin is so sensitive that I feel like it is live flesh and I barely can put on my slipper (only on the right foot). Another symptom I noticed since late April 2015 is that under the fifth toe of my right foot the skin is slightly excoriated and I cannot understand why, at first I thought it was due to my gait or to the long walks I took; but now, although I have not taken any walks for many days, and although Iíve been putting every evening a calendula healing ointment, the slight excoriation doesnít seem to heal at all (the skin is always reddened and burns a little when I walk), I really would like to know what all of this means.

Anyway I would like to specify that since May 2008 Iíve been noticing weird irritations and inflammations in my toes (mostly close to the toenails), and most of the times they donít heal at all (even if I tried putting anti-inflammatory creams on them). Besides that, in these last years some of my toes have a different sensitivity and I feel them irritated, inflamed and more sensitive than it is normal.

In conclusion of my Melorheostosis history, are all of these disorders I noticed in the last 10 and more years in my legs and feet, and that come, I guess, from circulatory problems (burning, sense of effervescence, occasional swelling and reddening, high hypersensitivity especially to my feet so that Iíve not been able to put on shoes and socks for years), caused by Melorheostosis? I guess they are, because if itís not Melorheostosis which causes all of this, I couldnít really know what is the cause to all these weird disorders that keep ruining my life.

P.S. I noticed from many reports written on your side by Melorheostosis patients that almost everybody simply complain about ďpainĒ. But what do they mean with pain? Joint pain? Muscle pain? A pain of some other kind? Because I would like to specify that in my case joint pain is almost absent and my joints move freely, at least by now. The disorders affecting my legs and most of all my feet seem to afflict connective tissue only.


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