Dear fellow lupies(alike),
Like you know I have since 2 years a diagnosis of UCTD (undifferentiated connective tissue disease). My rheumatologist prescribed Plaquenil 200mg per day. Some of my symptoms are reduced, but for over a year I have increasingly suffered from muscle weakness, muscle atrophy and muscle pain. My rheumatologist has referred me to a neurologist. They found no neurological abnormalities based on physical examination, a needle EMG of my legs and a nerve conduction study on my wrists and my ankles. Instead they said I was depressed (indeed that causes muscle atrophy) and should go back to the rheumatologist. Also a second opinion from a second rheumatologist returned no results except some abnormal blood results (ANA: positive since 4-5 years, IgM: 0.33g / l (reference value 0.4-2.3), B1: 217nmol / l (ref. value 80-160), Folic Acid: 42nmol / l (reference value 7-40) and vitamin B12. 1340pmol / l (reference value 160-700). In my urine over the past three years they found 2 times dysmorphic eryctrocyten (blood originating from the kidneys).
My proteine levels in my blood are excellent. I don't eat meat or milk that is why I take B12 supplements (orally) and a multivitamine), I eat fish once a week.
The muscle problems started in my thighs and hips so I cannot walk longer than 15 minutes (bought a wheelchair to be able to go to a zoo or museum). A few months ago, the problems started at my feet, I got high arches and starting claw toes. Moreover, I can easily make a so-called "pes equinus" (ie, stretch my legs and put my foot in the extension of my leg). I got new sole orthotics but this has hardly solved the problems. The last few weeks I got problems with my hands. The intrinsic hand muscles waste away. This also applies to the muscle between the wrist and the mouse of my thumb. See the attached picture of my left hand. Right hand is actually worse :-(.
These problems, together with the earlier problems I had already because UCTD limit my life seriously. I think that I have more than just UCTD, I suspect myself that I have SLE. Because I am afraid that now damage which is irreversible, I'm looking for a good rheumatologist who would like to start treatment, even though there are encountered no anti-dsDNA antibodies in my blood with the exception of positive ANA. I live in the Netherlands and am particularly looking for a specialist in Belgium, because of previous good experiences with specialists there. Should anyone want to recommend a specialist in the Netherlands or Germany I'm obviously open to that too.
Would like to hear if others have these kind of muscle problems too and what to do now?