I have MDS.
I developed L'Hermittes, went to Neuro and had MRI. Reported normal. L'Hermittes abated but, got tingling and tightness in feet and then to knees. Became ataxic. Returned to Neuro and had MRI. Report normal. Neuro thought he saw increased signal in posterior column cervical cord. Told to return in 2months.
Symptoms rose to my abdomen. Haematologist did a LP and MRI. CSF had increased protein and positive 14-3-3 protein. MRI showed definite signal change in posterior column. Decided to watch and wait. Had a few falls and admitted to hospital.
O/E positive Rombergs, couldn't tandem gait, nonresponsive Plantars, loss of vibration to T3, brisk ankle, knee reflexes with hypertonicity, loss of proprioception to the ankle. Upper limbs normal.
Hb low, neuts low, lymphs low, platelets low. Liver enzymes high, ESR high, ANA positive 320, Vit D low, zinc high, copper low, ceruloplasmin low, ferritin high. Urinary protein high, urinary copper high. History of low B12 now fixed.
Diagnosed copper deficiency induced myelopathy and cytopenia (not MDS). Started on S/C copper 2mgs twice a day . Serum copper normalised. Cytopenias better with slightly low WCC remaining.
Haematologist queries the diagnosis because of positive 14-3-3 protein in CSF, positive BMB for MDS (still) and neuro problem progressing despite copper replacement. Have new paraesthesia of left upper arm and right side of face. He thinks I ve an infective or autoimmune process. I was fit and well until I got severe atypical (Mycoplasma) pneumonia in 03 and have been sick since.
Could I have your opinion please?
I can't really comment on the treatment of your MDS. In MDS, the bone marrow does not make enough normal blood cells for the body, and this could be due to a number of possible reasons.
Usually in MDS the cause of the changes to the bone marrow is unknown. In a small number of cases, MDS is thought to be linked to exposure to some chemicals, such as certain solvents, or to radiation. MDS can also be caused by treatment with chemotherapy or radiation therapy for other diseases.
However, in your case you had what I assume was a documented case of M. pneumoniae and have been sick ever since that time. This could be the source of your problem. Most mycoplasma infections are under-treated or not treated properly, so often they persist as chronic infections. Certain Mycoplasma species are also linked to white blood cell developmental problems and in some cases certain forms of leukemia.
Thus you and your physician should consider re-visiting the M. pn. infection and consider re-treatment. By now this type of infection would be considered chronic and would require long-term treatment to effectively suppress it. More information on treatment can be found on our website www.immed.org, especially the second publication under Treatment Considerations.
Thank you so much. I always thought the Mycoplasma was the cause and ,yes, I had very high blood titres at the time and this test was never repeated.
I had 5 cycles of chemo for the MDS before it was ceased due to the neuro problems. That's why there is some doubt whether the improvement in the cytpoenias and blast count was due to the chemo or the copper or the combination of the two. The haematologist mentioned that the chemo may have potentiated a latent autoimmune process or infection in the CNS especially with the 14-3-3 protein present. He wanted to give me IVIG but the neurologist wasn't in favour. I have had a number of 5 day courses of IV antibiotics (and once for 3 weeks) for either infections or fevers of unknown cause while I was on the chemo so I don't know if an infection is still a possibility. Would this be long term enough for chronic Mycoplasma?
My haematologist is a wonderful man who is happy to listen to my ideas (and sometimes even act on them). My neurologist is a lovely man too but I see him very rarely.
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