Help feeling very lost

Hi I'm new to the website and to the illness. I have been having problem for 4 years. I have just got my bloods back and it show a positive ANA it's 1/640 I also have abnormal centromere the blood test says 'associated with limited cutaneous systemic sclerosis' I have problems with my chest for a while. My blood also says high red blood cell distribution width and low mean cell haemoglobin concentration. Can anyone help me make any sense from this .? My doctor has referred me to local rheumatologist but that's not for 2 months.

Thanks so much

18 Replies

  • Hello Sami13, welcome to the forum. I am sorry that you have had to post the same question twice because you have had no replies. Perhaps a wee bit more history about how you are & if you have pain presently might help. What kind of chest problems have you had? The forum is excellent, there are so many folk much more informed than me with regard to your questions. Your ANA indicates there is possibly some form of autoimmune disease. The rheumatologist will take your history & do appropriate bloods to ascertain what might be wrong & what treatments could be recommended. How is your skin? Has your doctor discussed any facts with you or given you any medication? I understand when you can't make much sense of your results that it can be a very worrying time for you. If you have the name & place of your local rheumatologist you could phone the hospital and ask to speak to their secretary & ask to be considered for any cancellations. You know Sami13 that you can ask your GP to explain all the blood tests a wee bit clearer, have you copies of any which you can post on here? I am not sure if I have helped you at all, but you need further tests & assessed by a doctor who works in this area. I wish you all the best and I do understand how hard it is waiting to be told what might be wrong & what it means. I have learnt more & more to ask what things really mean & how that will affect me. I do hope you will get other responses. Look after yourself. Very best wishes Pixiewixie

  • Thank you so much for the reply. I had fibrosis found on the lungs 4 years ago and have suffered from raynaulds all of my life although much worse the last few years. I have an appointment to see my gp this morning to talk it through in more detail.

    Thanks again for your advise

  • Even if your bloods come back indicating you may have an autoimmune issue it does not I itself mean you actually have SSc because sometimes it can be positive bloods but no illness has developed. The rheumatologist will also take a history of all your medical issues, do an examination of you, X-rays, lung function tests etc before even making any kind of diagnosis.

    I was diagnosed abou 8 years ago but it took about 18 months before Iwas officially diagnosed. Your medical history is important and it can take time to sort it all out. One common thing with limited SSc is usually Raynauds which can start many years before any other symptoms. Try not to worry - easy said than done but a 2 month appt is fairly quick depending on where you are in the country.

  • Thank you for the reply. I have suffered from raynaulds since I was a child although it's getting worse. My gp said lcssc as the abnormal centromere and lung fibrosis. My fingers have also changed shape. All very confusing ! Good to know 2 months seems ok

    Thanks again for the reply

  • Hi Sami, I'm so sorry you're dealing with this. Unfortunately, your history, labs, and symptoms do suggest lcSSc. Raynaud's is usually present for years prior to the development of other scleroderma symptoms in the limited variant of the disease, whereas in the diffuse (dcSSc) variant it shows up with other symptoms close behind it. Your lung issues are of particular concern and really shouldn't wait 2 months for further evaluation. I suggest that you ask your GP to either refer you to a pulmonologist for pulmonary function tests or order them himself. A high resolution CT scan may also be needed. Lung involvement is common in lcSSc and it is very important to treat it early in the disease. Is your lung condition currently being treated? You should try to get a referral to a scleroderma specialist, not just a general rheumatologist if at all possible. The disease is simply too rare and complex for most rheumatologists to have much experience with it. Where are you located?

    Hands and fingers are commonly affected in lcSSc, so that is also consistent with the disease. The thing to bear in mind is that each individual disease course is different, and many people manage their symptoms very well with proper treatment and management. Do you have good information on the disease to read? If not, I can send you some links to excellent articles for you to familiarize yourself with. Hang in there and please keep us posted on your progress. 💛

  • Hi dianekjs

    Thanks for the great reply. I'm not receiving any treatment for my lungs apart from an asthma pump (which doesn't help!) I saw the Gp again today but she said to call appointment booking see if I could be see faster. I called and they said 'no'. So I'm now waiting 2 months to see a rheumatologist and crossing fingers and toes they actually have good knowledge of the condition. I live in Essex and am close to London. I would love any links to information that you have. I am feeling every emotion at the moment. Guess that's normal though !

    Thanks again

    Sam x

  • I would get a message to your GP and ask her to set you up for pulmonary function tests as soon as possible. She should be able to arrange that or refer you to a pulmonologist. I'm in the U.S. and I know things work differently there, but this should be possible. I'd also ask about a scleroderma specialist referral - I'd hate for you to wait 2 months to see someone without expertise in this challenging disease. I will compile some resources for you when I get home this evening. Try to stay positive and proactive - you'll just need to learn to advocate for yourself and become knowledgeable about your disease. There is an excellent scleroderma Internet community at that you may find very helpful. Lots of information and knowledgeable folks there. 👍

  • I am reposting the following because links wouldn't open in the first effort. Hoping that they do now - if not, back to the drawing board.

    As promised, I've compiled some of the best scleroderma resources on the internet for you to be able to refer to. I strongly urge you to start the education process so that you can gradually become an expert in your own disease and your own best advocate. I hope you find the information as helpful as I have.

    Here is a great guide for newly diagnosed patients, and the rest of the site is also very helpful:

    This is written more for medical professionals, but "Chapter 23" is a classic in the field and widely referenced. I have found it very informative.

    Fred Wigley of Johns Hopkins Medical Center is one of, if not THE most renowned and respected scleroderma experts in the world. Ami Shah is also excellent and this article they co-authored is one of the best:

    The Scleroderma Foundation's informative site is full of resources, links, and information about all aspects of the disease:

    This video presentation by Philip Clements, MD, a highly regarded scleroderma specialist is widely circulated and very thorough:

    The Scleroderma Foundation's support community on their Inspire website has a knowledgeable group of members eager to share experiences and answer questions. The search field pulls up just about anything related to the disease you could think of:

  • Diane, I am very new to this website (just registered actually) and the disease itself (limited syst sclerosis). I can see you have given the lady above some very useful advice. I would love to read through the links you've shared but they don't appear full in the text above. Is there Any way you can send them again?

  • I wonder if the site doesn't allow link posting? I'll test reposting one here:

    I can also try in a private message if this won't work.

  • Ok, that seems to be working. I'll have to find all of them again and when I can I'll try to repost. No idea what went wrong before, they seemed to be fine when I originally posted them.

  • Thank you so much, Diane! The links did work this time.. I now have a kit of reading to do:) my biggest question at this point is really what can I do to prevent the onset of the disease further. It currently affects my fingers (reynauld) and I had one ulcer which healed a month ago. It is quite scary when I read all the other complications that might come down the road

  • Tanya, yes - I know it is scary. Since there is no cure for SSc yet, there's not really a way to prevent disease onset or progression. However, many are successful in keeping things manageable by reducing inflammation in the body and supporting the immune system with optimal nutrition. Eliminate all packaged and processed foods, try cutting gluten and dairy. No alcohol, little to no sugar. Eat only real foods from good sources, organic when possible. Lots of vegetables, fruit in moderation, healthy fats/omega 3's, avocado, nuts, olives, small amounts of healthy protein, etc. This can really help to get symptoms under control. Also make sure your vitamin D level is in the high end of the normal range. Most need to supplement D3 to get it and maintain it where it needs to be (50 - 80).

  • Thanks again, DIane...a lot to think about and plan've been incredibly helpful and I hope you manage your disease at bay. I've started reading the material you've shared and it helps answer many of my questions

  • See above. As I am typing they are all working ...

  • Just a suggestion but if you are near London, why don't you ask for a referral to Prof Denton Scleroderma Specialist at the a Royal Free? I attend the Royal Free for my PAH which is Scleroderma induced. I cannot speak highly enough of the care I receive from them, in my opinion they are the tops!! It certainly is worth the journey from down here in Somerset. As for feeling emotional I think that's all part of this disease, just try to be positive it does get easier believe me.

    Take care Jxx

  • Thanks to everyone for their replies It's given me lots of ideas and things to look at. It has helped me more than I can ever explain knowing there are people who understand what I'm going through 😘

  • Dianekjs

    Thank you so much it's great to feeling informed, I'll get reading.

    You are a star ⭐️

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