cornishgirl

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About cornishgirl

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  1. Thanks for the advice Judy and Jo. Having a bit of a bad day today I'm afraid - which I guess is natural in the early stages of seeking a diagnosis. Ended up crying in front of my boss - not a good look! I think tiredness has a part ot play - 5 yr old has chicken pox and 2 yr old just doesn't do sleeping at the moment so I will put it down to that. Lets hope tomorrow is a better day, or at least less waterworks on my part.
  2. Just read the supplements page and wonder if I'm doing the wrong thing by taking all the supplements I do: Omega 3, Magnesium, Vit E, Vit D, Iron with Vit C and now Evening Primrose. I did tell the doctor what I was taking and he didn't tell me stop taking anything but wondering if perhaps I should?
  3. September is a long way off but he said if the blood tests showed anything urgent he would contact me asap, which is reassuring. He works closely with Prof Denton on research projects/clinical trials so he has good credentials! He thinks the likely outcome will be putting me on a vasodilator - although I know they have horrible side effects so bit worried about this. Maybe try Plaquenil as well for the joint pain and fatigue. Also will have yearly LFT and Echo. He told me being anxious would really not help my health so I will have to try my best to remain level headed. As he said himself, treatments are getting better all the time and we have to deal with symptoms as they arise. Oh and he told me to go and buy some Evening Primrose Oil capsules?! Final thing, I would like some good ideas for combatting Raynauds. I know keeping my core body warm is key so maybe some thermal underwear is in order. Can anyone recommend any **heat pads, special gloves, supplements (I can't take Ginko Biloba as on anti depressant for anxiety) or anything else that might help.** Anyone had any good results with biofeedback? Thanks **[Moderator note....Please PM any brand names to Cornishgirl - Thanks!]
  4. I'm back from the Sclero specialist in Bristol - he was very nice. He looked at my nailfolds and I do have dilated capillaries so he has ordered blood tests. Back to see him at beginining of Sept - obviously he is in demand as that was the next available appointment. Will let you know the outcome when I know!
  5. Hi all, My appointment with Sclero expert is on Monday and I rang the hospital in Bristol today to confirm. I asked how long the appointment would be and she said 'up to half an hour'. WHAT, I am driving over 2 hours to get there (for 9am) and I'm pretty sure I'd still be explaining all my symptoms to the doctor at 30 minutes. Now wondering whether to bother and feeling a bit deflated. Maybe I should take my bike lock and chain myself to his desk. Also, just wondering if there are any pertinent questions I should be asking him. I definitely want to ask him about the possibility/safety of laser therapy on my face for the telangiectasia's but apart from that I'm not sure. I don't want to appear to be telling him how to do his job but I really want a nailfold capilliaroscopy done - or should this be conducted as a matter of course anyway? Finally, for the last few days, as well as tingling and numbness in my hands I've also been experiencing it on the right half of my head (almost constantly). It feels very strange! Has anyone had this kind of sensation in their head? I'm sure my husband and mother think I make up a new symptom every day. One day its the cold that is really bothering me, another day it might be my joints playing up and today for example its the tingling/numbness. It is really difficult to explain to them how I feel though and how things keep changing. How do other people go about explaining Sclero or any Connective Tissue Disease, to family and friends? I'll let you all know how I go on Monday.
  6. Jo - thats it why I am sticking to this site. I'm not doing myself any good googling all the possible ramifications so have stopped that! Judy T - In terms of telangiectasia - I know they really aren't worth getting worked up about, but when new ones seem to be appearing every week I just wonder when they will stop! I think I will definitely get some of the larger ones on my face lasered, once I get the go-ahead from the specialist. As an aside I have a question concerning sores. For the last year or so I have been getting sores on my scalp (big red raised pimples) that are quite...well, sore! Does anyone else experience this? Not sure if it is connected. Also I'm pretty sure my hormone levels have gone awry due to very painful periods, changes in menstrual bleeding patterns and excess hair where where a lady doesn't really want it...if you get my drift. My Doctor is reluctant to test hormone levels as I'm only 29 but something is definitely up. Anyone else had hormone issues related to autoimmune connective tissue diseases? Right must go and take 5 yr old to school and start on the pile of washing created by my 'reluctant to be potty trained' 2 yr old. Ooops not Jo - it was Amanda I was replying too. Too early!
  7. Thanks Amanda and Jo. In terms of how I pulled myself out of the hole I was in....well that was mainly down to my mother - she is very wise! She basically said that at this moment in time none of my symptoms were stopping me leading a normal life - yes I get fatigued, yes my joints hurt, but I can largely carry on as normal. What I was worrying about the most was the fear of the unknown, not the here and now. So, I came to conclusion that I may as well enjoy my life and my kids because no-one knows what is in store in the future. Like my mother keeps telling me - I might be run over by a bus tomorrow! (not likely in Cornwall as we have about 2 buses a week where I live but nevertheless.....) In all honesty, what really got me down and depressed was reading all the scary stories on the internet. Thankfully I found this forum and I know there is hope. In terms of the telangiectasia, I have them on my face, palms, fingers and new ones are appearing on my arms now too. I guess I will have to wait to see what the specialist says when I see him at the end of the month. Will keep you updated!
  8. Me again – hope everyone enjoyed the Jubilee! You will be pleased to hear I have got an appointment at the end of this month with a scleroderma specialist based in Bristol – so I don’t have to wait too long, for which I am grateful. However….. Interestingly about a month ago, just before I asked my general practitioner to refer me to a Sclero expert, I sent my local rheumatologist photo’s of my hands and feet when really cold and also when they go burning hot. I arrived home today to find a letter from the rheumatologist to whom I had sent the photo’s saying they show changes consistent with Raynauds and erythromelalgia….but that he still didn’t think it was indicative of an underlying systemic condition. He himself had noted telangiectasia on my hands and face and skin thickening on my face and the reason I had been referred to him by my general practitioner was symmetrical joint pain and fatigue. My ANA was positive, albeit weakly and I just can’t understand how he can say nothing is going on! I am really hoping the sclero specialist will take my symptoms a bit more seriously! Apologies for the angry tone of this – I just feel really let down (and a bit scared). Bristol is over 2 hours away from me here in Cornwall and it would have been so much easier if my local (still 40 miles away!!!!) rheumatologist was more helpful! Thankfully I have pulled myself out of the deep hole I was in earlier this year and am now enjoying life again , my children have got their mother back (finally!) and my hubby - well he still feels a bit neglected, mainly due to resuming another passion of mine - food blogging. I am also seeing an alternative therapist and continuing to take the antidepressants my general practitioner has prescribed, which I think have helped my mood greatly. Some days are still a real struggle though, when my joints don’t want to play ball and I feel so cold I may as well be in a freezer – the rubbish weather is definitely not helping! I hope we have a flaming July otherwise I may have to relocate to the Mediterranean! As an aside, I have also seen a dermatologist who says that laser treatment could help get rid of the telangiectasia on my face and also improve the patches of skin thickening. I am a bit concerned though as I know laser therapy promotes collagen production, something I guess that would not be helpful. Has anyone undergone laser therapy on their face successfully? Well, that’s it for now!
  9. I went to see my general practitioner today armed with a list of Sclero specialists. I asked to be referred to my nearest one (in Bristol actually) and she said she would write a referral letter. Hopefully am getting somewhere now. Thanks
  10. Thanks for your input. How would I go about getting referred to a Scleroderma expert? I see the nearest is in Bath - a 3 hr drive - which isn't a problem at all, but not sure how to go about it. Thanks
  11. Hi everyone. First up I should say I haven’t yet been officially diagnosed with Scleroderma but am under the care of a Rheumatologist. I live in Cornwall, 29, married with 2 young children with a stressful job in the public sector. I started to experience problems over a year ago. It started with symmetrical joint pain, fatigue, feeling really cold all the time (my whole hand would go pale but the tips of my fingers would turn bright red on exposure to the cold) but also experiencing periods when my hands, face and ears would become hot, red and burning. Since these initial symptoms I am now experiencing elbow pain, numbness in my little fingers and base of palm, dry eyes, itchy skin and heartburn. I was referred to a rheumatologist who examined me and did lots of blood tests. During the examination the rheumatologist noted telangiectasia’s on my hands – 1 on my right hand, 4 on my left and slight skin thickening at the top of my nose (which I had put down to too much sun). My ANA came back weakly positive 1:80 in a homogenous pattern. When I went for the follow up appointment with the rheumatologist said he said he had ordered the ANA test as he had a clinical suspicion of scleroderma due to the thickened skin, poor circulation and telangiectasias on my hand but said he could rule it out as the ANA pattern was homogenous and that was more specific to SLE. I was basically sent away and told to get on with my life – easier said than done. I have repeatedly gone back to my general practitioner and also emailed the rheumatologist explaining my symptoms and how they are affecting me day to day – they prescribed eye drops, omeprazole and anti depressants! They say I haven’t got Raynauds as the colour changes aren’t consistent with Raynauds – I don’t agree with this….coupled with the fact I have telangiectasias on my hand surely already would point towards a Scleroderma (CREST?) diagnosis. Is it normal to have telangiectasias on the hand without an underlying cause? Would SLE still be a more realistic diagnosis – I didn’t think telangiectasias were seen in SLE? I really feel I have been abandoned by the medical profession and that no-one is taking me seriously. It’s affecting my day to day life, my children, my husband….the list goes on. I’m not sure where I should turn to next. I am fearful of Scleroderma and how it may develop, I am scared what the future holds – I’m only 29. Obviously I have read lots of horrible stories (mostly from the US to be honest?!) about where this could potentially lead. All my symptoms at the moment I can deal with (they are relatively mild) – I think what is fuelling my anxiety is the fear of the unknown, not helped by the fact I am not being monitored by anyone. Do I have to wait until something really goes wrong? I suppose what I am asking for is both advice on where to turn and also for people to give me hope that if and when the diagnosis is confirmed that there is life after Scleroderma. How normal a life can I expect to lead. Apologies for the long winded ramble.