pain in foot bone and mri changes

[dufffoot]

Hello, can anyone come up with some suggestions of what is wrong with my foot, its baffling my rheumatologist and orthopaedic surgeon.

Basically, I've had high levels of pain in my foot for several years, at least eight. I've reported this to GPs, gone to casualty but always told there was absolutely nothing wrong with it and to go away. The pain is on the top of my foot (not underneath) in the middle bone and running into my toe. It flared up badly following my first pregnancy 2006 but again I was told it was fine as xray showed nothing and basically told I was a hypocondriac, despite the fact I could barely walk!   Then I had a course of physio for sympis pubic dysfunction and my hypermobility and after a very gentle few weeks of 2 mins stepper, floor work, my foot was getting worse, and I told the physio, who examined my foot and reported swelling and discolouration, she refused to treat me any longer as she thought it was a stress fracture.  I had xrays which showed something so they put me in plaster, when back 2 weeks to be told there was nothing odd on xray, plaster off & go away. I snapped and wanted to see someone, so they sent me to a trauma and ortho, who had mri done, probably to shut me up and guess what - it showed bone changes. The middle bone is all white, not black like it should be. They have ruled out stress fracture, bone infections and arthritis (although I do have early onset general osteo arthritis). They also noticed that a nuclear bone scan done a year ago showed activity in my foot, despite being told at the time that it was fine and go away. I'm now on morphine patches and tramadol for the pain,

I saw rheumy today and he thinks its neuropathic, but wants an infrared/thermo scan done(sorry nearly sleeping by then).  I have just been discharged by neurologist after I had a skull and spine mri for suspected sub acute degeneration of the spinal cord secondary to pernicious anaemia, but was told there were no significant leisions. I don't have much faith in neurologist though. Have Juvenile pernicious anaemia, 12 years approx.

Please can anyone help, I feel like I'm going mad.

[dufffoot]

Thanks for you reply.  I've just seen my podiatrist and asked for her opinion on my foot, she examined it and commented on heat on the affected area, which is something the physio also noticed, but I've never noticed it myself.  Also she said there looked like some bruising. She went through her file and it shows the same problem going back before 2003, and she thought then that it was neuropathic, or possible mineralisation/calcification so she had referred me to a ortho surgeon who said nothing wrong go away. (I'd forgotten about this - memory v bad, they tell me its the high pain levels affecting my memory).  She raised the possiblity of it being bone tumors or leisions, please can you tell me what these are and how likely you think it may be a tumor or leision? I've never heard of either. Also what treatment would be necessary?

I am concerned that I'm getting a similar pain in my other foot, but keep trying to convince myself its just pain from overcompensating.  

The rheumy has told me that there are funding issues regarding the thermo scan and its going to take at least 6 months, if it happens at all.

Regarding your suggestion of a sports clinic, I'm afraid we live in a very remote area, I already travel 100 miles to see my rheumy, initially I paid £1k to see him privately because I was getting nowhere with my local hospital/gp, thankfully he then added me to his nhs list.  I have asked my doctor to refer me to haemathologist out of our area, but they have refused.  The option of going private is no longer open to me, as I've been unable to work for the last year, due to the pain and extreme fatigue.  

Thankyou for reading and I appreciate any advice or suggestions, I can't face another 8 years of this.

[Dr. Kokil Mathur]

Hi
Welcome to the forum!
It is really difficult to comment without examining. However if there was an activity on bone scan, then it is possible that because of the anemia, the bone marrow of the tarsal bones was getting activated to produce red blood cells. Discuss with your doctor (PCP) and get a referral for a sports clinic and consult a sports medicine specialist or a hematologist.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!