suze932

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About suze932

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  1. Hi Buttons I too have had to have extractions over the past few years, following abscesses and tooth loosening due to Sjogrens, Sclero gum disease and my front teeth are also now loosening. I was referred to the Eastman Dental Hospital in London some years ago and it now appears that I might fulfil the criteria for prosthodontic implants due to my unsuitability (lack of saliva) hindering adhering a normal dental plate. I now need to wait and see what happens next as I have had to be re-referred to the Eastman by my dentist. Unfortunately, in spite of a great deal of dental care and attention it has come to this but at least I know that the pain associated with loose and failing teeth will be reduced eventually.... always a positive somewhere to look forward to I hope! Best wishes Sue
  2. Hi ladies Thanks so much for your positive input to my falls and recuperation whingefest! My general practitioner (GP) has now referred me back to my local Sclero specialist- hopefully prior to my September Royal Free Rheumatology appointment - to see what he suggests re. onward treatment and osteoporosis recuperation. GP has also referred to a physio as it is my great belief that unless we keep moving we stop altogether! The first three sessions have given me some tips on how to manage movement and so far it seems to be working, unless I do too much in which case pain is not easy to get a handle on, but amytriptyline short term at least allows me to sleep. Will come off this as soon as I can though. Your kind support and advice is great. Thanks. Sue
  3. Hi Judy Thanks for the posting. My update on the thread is that 2013 has so far been a Kamikaze year as I seem to be in self-destruct mode, having suffered a heavy fall on my right shoulder, jarring my neck and spine, when getting out of the bath. Careless or what but apart from feeling really stupid, the knock on joint inflammation effects have been really excruciating. I am not normally a wimp about pain but don't seem to be able to get it under control, in spite of patches and painkillers. I have not so far been back to see my orthopod and no appointment to be re-DEXA-scanned to see how the Alendronic Acid is affecting my bone density score so am going back to my general practitioner this coming week to see what she suggests, although it is usually a straight re-referral to wherever is thought fit! Can you remember what kind of recuperation time your spinal fracture took to heal. Obviously in view of the above'dive-bomb episode' I will have to add on some considerable time for my recovery but it would be nice to have an idea as prospects seem to be gloomy at the moment. Thanks for everyone's support. Sue :emoticons-clap: :emoticon-hug:
  4. After I saw my local Rheumatologist and asked about the continued use of steroids and other medication being linked to my osteoporosis (diagnosis now confirmed). He is of the opinion that as I am currently feeling so rough after the injury, that I should stay on all my meds for the time being as tapering me off the steroids would probably be counter-productive at this time as they are helping to keep me going! Swings and roundabouts I s'pose! He has also put me on Alendronate for the osteoporosis - a once weekly pill which must be taken standing up and with no food or other medication as otherwise it causes burning to the oesophagus - lovely! Otherwise I am taking slow exercise and managing to frighten the passers-by with my wheelie-zimmer-frame! At last I feel as though some progress is being made to recover from these fractures and that alone is a lot to be grateful for! Thanks for everyone's support over the last couple of months. :emoticons-clap:
  5. Hi Jo Does that mean that I can appear as a huge blue superslim Avatar with a perfect body, a long plait and powers to repel monsters whilst travelling at speed through the trees in a fantasy landscape? I wish!! Now that would be an escape from the disease of Scleroderma. Seriously, thank you for the fun detail. It does us good to change our image and outlook on a regular basis.
  6. Hi Shelley Thanks for the good wishes. Unfortunately at discharge from hospital I was only told to 'let nature do its thing' and no twisting and bending, lifting etc. but no idea as to how long I will be incapacitated. Google was, as usual, worst case scenario of several months recuperation but at least I have learned to take this type of advice with a pinch of salt (low-sodium of course!) I am doing as I'm told but still having a lot of pain. and just have to try to keep ahead of it with the painkillers I usually take for chronic back problems. However,I have a local rheumatologist appointment on Tuesday and will bring up the continued use of/gradual withdrawal of steroids, (if possible) and hopefully get an idea of when they will re-DEXA scan me to give an idea of the osteoporosis damage thus far. At least I will know what I am up against. The wheels always seem to go round especially slowly when awaiting results, don't they! Am currently on double crutches and getting about indoors. I know I should be exercising, such as gentle walks, but without medical guidance am frightened to do too much, too early - it's a month today since my accident - so a combination of lying down and movement seems to be the thing. In other words I must listen to what my body tells me to do! Just as well the French Open tennis is on and I have plenty to keep me busy as I am going slightly stir-crazy! Will keep posting. :emoticon-dont-know:
  7. Thanks for such a rapid response. The link was really useful as although I take a Calcium supplement to counteract the effect of the steroid I did have osteopenia at the last DEXA scan last year and am now due to have another DEXA soon. Hope that whatever has caused the fractures can be got to grips with before too much damage is done as, as you say from your husband's experience, it is very painful and debilitating. Highlighted by the fact of doing something REALLY stupid I caused the injury to myself! Superwoman I definitely ain't - more like a flipped turtle at the moment! The support of the forum is so appreciated. :thank-you-2:
  8. Spinal Fractures - linked to long term use of Prednisolone? Has anyone experienced spinal stress fractures following taking steroids for a long time? I have just got out of hospital having spent 5 days after fracturing 2 thoracic vertebrae whilst twisting and moving a window box, virtually no weight-bearing involved. I was informed by the orthopods that this manoevre alone should not have caused such an injury and so the follow up apart from bed rest, no lifting, twisting etc.etc. is to check whether I have osteoporosis as a result of long term (20 months) use of steroids for Scleroderma inflammation. Any advice from anyone experiencing similar problems would be much appreciated. A problem shared is a problem halved and all that stuff............
  9. Hi Just saw your post - better late than never! I have sore areas around my bra and trunk area, no inflammation but the skin texture is coarser and more raised and is uncomfortable when wearing an underwired bra. I must say I did think it was Sclero-related but that query has always been forgotten off the end of the list when going to Royal Free appointments so thanks! I also have a large bust and so bra-less or t-shirt type bras are not for me, so we could be starting a trend to let them hang free at home! Great posting, take care and enjoy the sunshine.
  10. Thanks Amanda and Joelf As I suspected, an answer to my post would appear - thank you! I am not scheduled until September(!) for my cardiac MRI (due to RF paperwork mix-up) but am on diuretics in the meantime and will be checked by Dr. Coghlan in May so haven't quite such a long wait as I don't even know what level of damage there is to the heart, so panic prevailed, needless to say! I also am claustrophobic in the MRI tube but also will ask for assistance when my appointment comes around. Thanks again for your explanation which was very helpful.
  11. Hi, Has anyone been diagnosed with diastolic dysfunction of the heart muscle please? I am breathless on exertion and fatigue seems to be gaining on me! As a result of a clinical trial planned right heart catheter and unplanned left heart catheter the same day at the Royal Free, my heart muscle is apparently not functioning correctly on the left hand side due to stiffening of the tissue - diastolic dysfunction on the report. Needless to say I have frightened myself to death as cyberspace classes this as part of heart failure(!) As a result of the tests I am to have a specific MRI scan of the heart to ascertain whether this is caused by Scleroderma or other reasons. I have Limited Systemic Sclerosis. query RA (tbc) and Sjogrens Syndrome. Any words of wisdom please as my MRI could be some time off and I'm sure there will be a member who has been through this themselves. Thank you.
  12. It's so true. Since I have had the latest extractions, and before, my front teeth have started to 'gap and spread' in an alarming way and I am very aware of this. Sjogrens, in spite of frequent visits to the hygienist, and due to lack of saliva leaves my tooth enamel stained, so I have definitely lost confidence in my appearance. When I think of how I used to be suited and booted for work, until two years ago, I feel a bit like a bag lady! However, all the comments and suggestions, always supportive, from the forum, keep me going forward and in the great scheme of things, 'how important is it?' I shall persevere with my dental treatment, whatever it brings - the blender won't be needed yet! Keep posting and kind regards, Sue
  13. Hi, Thanks so much for your supportive advice. It confirmed what I had already supposed as, even if I was to win the lottery (to be able to afford the implants!!!), the risk of failure due to Sjogrens and associated gum disease has made up my mind to go the route of partials, subject to a second opinion, possibly re-referred to the Eastman Dental Hospital in London. (The clinic I was referred to was obviously 'cosmetic' and implant oriented and although coming out with a Hollywood smile would have been nice, being able to chew is my first priority.) I previously had a partial with a bridge attached by claws. Unfortunately these claws loosened the opposing teeth, onto which it was attached, causing loosening and the recent extractions! I really appreciate the feedback, especially as my only other option was becoming toothless! Looking on the bright side it may have come in handy at Hallowe'en! Hey ho, never boring with Sclero is it? Thank you and a great forum! :emoticons-group-hug: Sue
  14. Does anyone have experience with dental implants please? I have Limited Systemic Sclerosis and Sjogrens. Due to Sjogrens and associated (?) gum disease I have lost/had extracted several teeth in a short space of time. Implants (together with their astronomical cost) have been suggested but with a caveat that there is a high bone failure rate due to Sjogrens. Before embarking on dental improvement to enable me to chew my food better and especially as I may lose further teeth, does anyone have any experience of Sjogrens and tooth loss and how do they manage with eating! Not an enticing prospect to look forward to!! Thanks.
  15. Hi Chockers Yes, I'm definitely signed up for the mad team. Have recently been away for 4 nights on a Saga Summer Gardens of Dorset tour, which, despite my preconceptions, turned out to be fun. Nice hotel, good food, a lot of laughs and lovely gardens - just what I needed to recharge the batteries and I also wasn't made to feel that I was holding everyone back, which was a pleasant bonus. as my mobility is not very good. Just goes to show what you can do if you push yourself. There's life in the old bird yet despite Scleroderma, Sjogrens osteoarthritis and joint pain. :emoticons-yes: :emoticons-line-dance: Sue