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gordon

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About gordon

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    Newbie
  1. Supplements

    Hi all Gordon here As my consultant is not up to date with my condition I have had great support and advise from this forum of which I can't say thankyou enough there are some lovely people within this forum,ive just come across a book which I have to found be good reading it is about healing with vitamins it has a chapter on sclero which I have found very interesting,it does say that what causes most cases is not known,it has highlighted polyvinyl chloride this is found in soft plastics,in spain some cooking oil has been the blame,in the usa it mentions an amino acid suppliment used to treat insomnia,the one that caught my eye was trichlorethylene this is a grease dissolver which I think has now been banned but as a car valeter I used it all the time,but of course I can't say if that was my trigger,further on in the chapter it has a presciption for health I am wondering if anybody is on these nutrients and have they had any help from them,this is what the book recomends a number of vitamins and minerals. I know I would have to discuss this with my consultant but I thought I would put it to the forum as we are all after one thing a good quality of life. many thanks fondest regards gordon B)
  2. Results

    Hi All Gordon here just to let you know I got my blood protien results back on monday,its been a long three weeks since my bone biopsy,the protiens they were worried about are known as (mugs) i think but they are the main cause of bone marrow cancer which on top of my sclero was a big worry for me and my family,the results came back good :D ,although they will be checking me every six months.In the past three weeks ive also been back to the rumi,my condition has got worse, :unsure: but she told me it will get worse before the methotrexate takes over my imune system again,she also said it could take three to six months to kick in,she has raised my dose to 20mil starting next week, and told me thats it at the moment thats all she can do,i go back to her in three months,shes just told me I have to stay positive,which is true, thankfully I havent the cancer to worry about,have to get back on track again. need a boost of uplift if you can many thanks fondest regards gordon
  3. Update

    Hi gordon again had my meeting with the heamotologist this morning,this was arranged by my rhumo,because she had noticed a high protien level in my blood,i went all through the usual blood tests height weight etc,then got to talk to the doctor who was to no suprise quite concerned,in fact within the hour I was having a bone biopsy totaly unexpected but its done,now ive got another three week wait for results,he wasn't able to tell me if it is to do with my condition,as far as my condition is going I am getting around better the tiredness is still there but dealing with it,Three weeks isnt to far away im sure this is only a blib in my recovery,hope you are all well, speak soon fondest regards gordon
  4. Update

    Hi Gordon again I've just finished my three day steroid coarse, feeling a bit full today but im feeling very positive. I've also started my methotrexate injections. i've a long way to go as I will be injecting for anything up to 2 years. I have my meeting with the heamotology about the protein levels in my blood on the 4th june have to see what they have to say. i would like to say a very big thank you to all the support I have recieved from this wonderfull forum, i have with your help enlightened my consultant into the complex condition of which we are going through in differant stages and forms. mine has been diagnosed as local scleroderma mutiple morphea. ive learnt some long words in the past few months. i havent been in this forum long and have already met some wonderfull people. i was put at ease very quickly and as I mentioned im feeling very positive :D it had affected my family as a friend of my partner was told by an untrained doctor I had slow death syndrome--how uplifting is that? to any newbee who has found this site you have come to the place where the people here just uplift you with there love, help and comments. dont be affraid to ask anything. im fixing a puncture on my bike today to start getting fit again and start looking forward. take care, speak soon very fondest regards gordon x B)
  5. Itchy Spot

    Hi barefut, I also have an itch in the very same place,its been with me for the best part of six months,how strange im also quite handy with the pasta server,or my son fondest regards gordon
  6. Results

    Hi gordon here,finaly 5 weeks after my biopsy I had a phone call today it seems I have localised scl, and my treatment is to start as from tomorrow. i was first told that I would have a large dose of steroids infused once a month for three months, thats out the window - i now go in wednesday thursday and friday. my consultant has told me it will make things a bit better, i will then have to ask her about the methotrexate, will post tomorrow, fondest regards gordon x
  7. Self Help

    Hi There Gordon again, I phoned my hospital this morning hoping for some results,but nothing as yet,my consultant did tell me she was concerned how quickly it had spread around my body,ive been booked in to see a heamotologist [spelling] because of the protiens,i have also been told of the possible treatment which is a large dose of steroids and tablets called I think methotrexate,she still thinks its localised scl,ive always been fit and healthy and im just wondering if any body has tried and tested any thing for self help, non prescriptsion,just to give you a better quality of life,since finding this forum im reading reading reading,about things that do help but has anybody had hands on experience, i do realise some things work better for some people than others,but it was just a question thats going through my head at the moment, many thanks kindest regards gordon
  8. Getting To Know You - Archives

    Hi There My name is gordon. im a newbee, in fact did my first post a couple of days ago, i got a very warming and caring responce which was fantastic. All the stories touch a nerve, i myself am still waiting for a biopsy result which has been nearly 4 weeks now. im a very outdoor person enjoying all aspects of outdoor life, i have a 2 year old working springer spaniel to keep entertained, i have been with my partner lyn for nearly 9 years. we have a 7 year old son and my stepdaughter is 15 going on 20. we share our house with 2 persian cats, a barn owl, 3 chickens, a rabbit, guinea pig, 2 ferrets and 2 goldfish. already what I have seen in this forum has been uplifting,hope to speak to you all soon. kindest regards gordon
  9. Hello, My name is Gordon. I'm 45 and from the UK. I found this site today and have spent most of the day reading peoples stories,and experiences,it has been quite something,i myself have not yet had a full diagnosis,im still after 3 weeks waiting for skin biopsy results,i have all the signs and pains of this condition which started with a skin scaring on my right arm,then a very large bruise like wound on my leg,my local general practitioner had no idea what the problem was and I was left with no idea what was going on,i was eventualy sent to a consultant who gave me some idea and sent me for the biopsy since her diagnosis my condition has got worse both legs all up my trunk both sides slightly across the chest and down both arms,i would like to say I havent been able to ask any body about this condition as I am the second case my consultant has seen in 13 years,its the not knowing that has been frightning,thanks for a website like yours I feel a little more at ease although I have a long way to go,can somebody tell me if this condition affects the protiens in the blood,as ive been told I have a problem there sorry to go on. Many thanks, Gordon
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