My Mother has myelofibrosis. It is an ugly disease. She is now on so many meds. She has swelling and nerve pain in her feet where they burn and they get beet red and at some points are blue. She has extreme difficulty breathing now that she is on breathing treatments. I was wondering, she now has lesions appearing on her skin that are painful, not healing and very red. A doctor today told her it could be skin cancer. Does anyone know anyone that has this too.

To Anon10763

Things to watch for include (1)anaemia-possibly severe and this can cause excessive tiredness and/or weakness (vitamin D may help but check with your MD)-plus damaged body metabolism, (2)platelets may not be properly formed and count can vary widely above or below normal 150~400 range interfering drastically with clotting, causing inability to clot or excess clotting, if on Warfarin for excess clotting remember vitamin K is important in correct proportion, (3)white cells may not be properly formed and can be excessive which if not controlled may lead to leukemia, (4)fever/chills-victim body temperature may be 1~2 degrees higher than other people so she may be freezing one minute and throw all blankets off the next, (5)where spleen is removed-victim's blood purification is poor and immune response may be seriously compromised, ie common infections become major problems, (6)lower limb fluid retention-once my partner's spleen was removed she had badly swollen legs from the knees down every day. We put in GS dirtypower filters Sep-07 reducing 560~620 GS units to sub 30 and her breathing improved first night and usual mild night time headaches disappeared. One week later lower limb swelling disappeared and only returned when in hospital for 3 weeks for a common Staph infection and ward GS reading was 450, swelling disappeared a week after getting out of hospital, (7)if dangerous medication is required then their side affects may include impaired liver function, liver spots on skin, hair loss, unsightly marks on nails, longer time to heal, excessive uric acid, gout, etc.

Whilst the EMF/EMR cause can only be conjectural, it is obviously heavily implicated because once we removed almost all of it from our home by GS and memon most of the common symptoms associated with my partner's myelofibrosis reduced dramatically or just simply disappeared - for as long as possible we pray as she is now in her 8th year of an expected five! One further suggestion is that diet may help including undamaged by processing W3, W6, W9 oils in correct 2:1:1 ratio, Udo's oils(Erasmus)combined with full range of essential vitamins/minerals including those important ones systematically refined out of our foods eg Silica which is involved in immune system health and connective tissue well being. For the beauty conscious ladies it is the natural source of the body's collagen production.

Please remember you are not alone and we understand your worries, I hope some of what we've learned may help you. Regards from Anon10498

My mother was recently told that she has myelofibrosis. She is seeing the doctor every 2 weeks for blood tests. Can anyone tell me things to watch for. Her ankles and legs have been swelling and painful and I didn't know if this was caused from this or not. Her doctor told her it could just be age. If anyone could give me a good resource to check out more about this I'd really appreciate it.

Dear anon304:

My partner(53) has had myelofibrosis 8 years with spleen removed. Until recently her fortnightly blood tests showed very high 1100+ platelet count (normal persons are 150~400) and she had to have 1000mg of hydrea a day. Years of anemia was so bad she was on 4 iron tablets a day. Two months ago I purchased from Germany a household memon 4-combi electro-magnetic radiation (EMR) transformer in the hope that it would stop my hearing loss (daily hearing tests) and terrible hyperacusis pain from the EMR of wireless Internet routers. Well it certainly did that and inside two days but it had other welcome and very unexpected affects. It was only in the house 2 weeks and my partner's years of anaemia vanished entirely. She has not had any iron tablets in the past 6 weeks since and her haemoglobin remains normal. At the 4 weeks mark the very nasty platelet killing Hydrea was halved to only 500mg.

It is still too early to say how much improvement my partner will achieve over time, especially when I can double her protection from 12/7 to 24/7 in 2009 when memon's personal model is expected to be released. We are hopeful that the future will hold an even further reduction in the hydrea from its present 500mg. It's an awfully wild and outrageous hope from the the medical profession's point of view but we hope to reverse the disease or at least reduce her medication to negligible amounts a path that the last 6 weeks of blood tests shows we are well on the way to achieving.

From our limited experience it seems EMR is heavily implicated in some of the side-symptoms (excess platelets and pathetic haemoglobin levels) which would suggest that it was probably EMR which caused the disease in the first place - probably from the intimately very high EMR levels from my partner's now destroyed electric blanket. As the world is sold the dummy that EMR is safe by the wireless technology manufacturers and people are subjected to 24/7 ever increasing radiation I believe the only way the incident rate will go is up, probably dramatically.

My father was diagnosed as well, since then i have met another person with the illness as well. However my father doesn't let us know what is going on with him and it makes it even more scary for us.

Is this a disease that seems to be on the rise? I now know 3 people in the last year, including my father that have been diagnosed with myelofibrosis, which seems odd considering 1 in every 100000 has been previous stats.