Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About thisisme

  • Rank
    Senior Bronze Member

Profile Information

  • Location
    London uk

Recent Profile Visitors

1,413 profile views
  1. At last, things are about to happen! Had platelets today, as they were down to 11!, normal 150-400. My platelets are now being matched, as I developed a reaction to unmatched, so I have to be prmedicated with steroids and peiton. I find it hard to keep awake, when I get this :-) Tomorrow, I have a lung function test, on Thursday, see the Prof at Royal Free, more platelets on Friday as well as blood transfusion. On Monday, start on cyclosporin will have to stay away from infection, as I have to be as well as can be expected. If all goes well, with cyclosporin, I will start ATG, in 3
  2. An update. Have now developed a heart problem and have to take Glyceeryl trinate and undertake tests. To inject iodine, will be too invasive and could cause more bleeding, so have to be injected with something to make my heart work, as if I were on the treadmill, forgot to write down what the procedure is called :( Also have to undergo chest investigation. Fortunately Mr sclero has taken a back seat, apart from skin hardening, which makes finding soft skin, for the needle to go in, becomes increasingly difficult and soooo painful. Any ideas on making this more comfortable? I still ha
  3. Thank you all :-) Looks like things are starting to happen. Had further 2 bags of platelets yesterday and another 2 ordered for Friday. I am to see a professor in platelets at St George`s hospital, Tooing. It seems it could be autoimmune related! Am to see Professor Denton, on 15th, an ambulance will take me. I will keep you updated, as and when. Lynne
  4. Back in hospital, with platelets down to 13 again, more transfusions 3. Was discharged on 27th, fortunately, the sister accompanied me to the taxi but I collapsed by the lift, she called for a wheelchair, saying how sorry she was but as I was discharged, there was nothing that could be done, so I got home and called an ambulance. When I was back at hospital, it was called a failed discharge, so was transferred back to the ward and could not be seen by A&E but had to wait for the night doctor, was seen at 2.30am, platelets down to 12.. Released today, with platelets at 39, so will be back i
  5. Thank you Gail, for your good wishes. I was at the day hospital yesterday. The result of the bone marrow biopsy, will not be back, until next week.......The good news is, my platelets seem to be holdig they have only dropped by 2 to 54....normal is 150-300, the prednisolone is holding them. The 2 conditions they think it might be, are ITP (Idiopatic thrombocyytopenic purpura) or MDS (myelodysplastic syndrome). We are hoping it is ITP :-) Lynne
  6. Thanks Amanda. Yes Royal Free nurse has phoned back, am to give the fax number for Prof Denton/Dr Ong. Prednisolone might have kicked in, as petechiae and purpura are not as many :-) and I knocked myself and was able to stop bleeding. I will be giving the local Dermatologist a piece of my mind, if I had listened to him, I might not be here! BUT I AM :emoticons-yes:
  7. This might be a bit garbled....Here goes. Last thusday, I phoned Royal free, because of bruising, they wanted me to go straight away, to see them. I told them, I had a rheumatology appointment, the next day. I saw the rheumatologist, what I thought was telangiectasia, all over. he didn`t seem concernered, just said the desease was progressing. Again, I pointed out, the Royal Free suggested a full blood count, reluctantly, he wrote out a blood form. I was phoned at home, at 7.30pm, to go straight to A&E, my platelets were 12, average is 150! Was hospitalised, and given platelet
  8. It is wonderful to have another place to come. Thank you to everyone who helped in setting it up. I was only asking, on Saturday "what does one do, to help stop getting ulcers" I was told, to keep warm. There I was, with open mules. Come May, I am always as barefooted as one can be. Yesterday, I noticed a red spot on one of my toes and it itches. Could this be a start of an ulcer? What do I do? Go to my general practitioner? How do I tell him how to treat it? Go to a dermatologist? Does this mean, I will always have to keep my feet covered now:-(
  9. I am sorry to hear the problems you are having. Are you able to get a ring cushion? It` shaped like half a doughnut, with the center cut out. I hope you soon get relief
  10. Hi Amanda, It sounds like I have it too...........Your not having it on your own! :-) Mine, on forearms, alert me, by itching, when I look, it is like a bite, without entry hole, after a couple of hours, it is as if it is filled with pale yellow substance, then flattens out, with a lilac ring. We can compare them, on Saturday, haha!
  11. I didn`t reply to this, when I first saw it, Ears and noses, are the only part of our bodies, that continue to grow, or so I was led to believe! I looked at one, Nah! growing, then the other EEEk, it`s shrunk, I wear pearl studs and there is no lobe behind part of it. Good job no one can see both at once :-)
  12. Just had a eureka moment! Reading someone`s thoughts, on what she thought, caused her scleroderma. She believed Premarin prescribed as hormone replacement therapy (HRT) was the start of her problems. It caused a light bulb to explode! Wow, that was when all my problems started. Can any of you ladies, relate to this, or is it just a coincidence?
  13. Hi, a bit late in my posting but I wish to share the remedy for pain relief, I have used, since the birth of my twins, 36 years ago. Most of the ladies will know about deep breathing. I was too scared with my first born to do it properly. I had NO pain with the twins, yes, I could feel what was going on but without pain. Since then, no matter what pain I have, it works so long as I do it the moment the pain kicks in. I deep breathe. It's no good if I let the pain take over though, as I don't seem to relax properly. I also find it takes away RLS (restless leg syndrome), migraine, neu
  14. Hi Carrie, No thank you, I am now happy with it, thisisme, I am who I am, with all my foibles, CREST and whatever. I feel a song coming on, so am going to read, instead..............Don`t wish to deafen you all :-)
  15. Hi Sophiebun, How are you now? Reading your post, took me right back, to 4 years ago, I thought I had swallowed fish bones and was constantly coughing, to release them. I could only say a word, without having to take a sip of water, only to be able to say another word. I went to general practitioner, he couldn`t see anything, sent me to ENT, he looked with camera, said the esophagus was inflamed and would have to have general anesthetic to have a better look. It turned out that acid reflux was great, even though I never felt I had heartburn. He said the vocal cords were damage
  • Create New...