I have been feeling unwell for ages lots of different symptoms,eventually a nurse practioner ordered blood test and they came back positive for antinuclear antibodies centromere >8 in July 2022. I was referred to Rheumatologist who as in turn referred me for several test,
Ultrasound hands- no issues showed up
Nerve conduction- no issues showed up so no carpel tunnel
Chest x-ray - fine
Nailfold capillary- no results yet
Thermography testing - no results
So I saw him for the second time on Monday,the first time he suggested Fibromyalgia and ordered the test, this time he asked how I was .I tried to explain the trouble I was having specifically in my hands and feet,pins and needles, numbness and pain and difficulty in using them,also general aches and pains all over my body and terrible fatigue . He mentioned he would write to me when Nailfold test results come back and would prescribe write to my GP to get new medication prescribed as I had to stop Amitriptyline due to side effects to help with pain. But he just said about fibromyalgia again and when I mentioned my centromere blood test he said stopped worrying about it, we will see, then he said he will see me in 8 months!
This seems a very long time to be doing nothing else to find out what’s going on with me I haven’t had an official diagnosis for either, when he first wrote to my GP he put probably fibromyalgia due to several tender spots and suspected Systemic sclerosis . I feel in limbo and it is affecting my mental health, I have given up work and have tried to claim pip but was unsuccessful.
My question is ,is 8 months a normal amount of time between visits to do nothing and how long does it usually take to get a diagnosis? Any help or advise would be appreciated.
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Buttsy
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I really feel for you and anyone at this stage - which most of us do go through - some for years, even decades. The uncertainty and waiting you are experiencing and worries about test results and diagnosis are the absolute pits.
Once we are diagnosed and treated for a rheumatic autoimmune disease - then an 8 month interval is fairly normal these difficult days - although my rheumatologist tends to either phone or either see me 4 monthly for various treatment related reasons. But I was almost discharged 4 years ago by the previous rheumatologist with implied, rather than stated, fibromyalgia as well as my diagnosed Sjogrens. All of the tests you’ve had (didn’t get a thermography though) have come back normal but this is because they weren’t actually the tests I needed. For me it was gastric emptying scan and other GI tests which showed severely slow transit from mouth to tail.
And before this I had many years of being told that swelling and pain was RA (which they treated but didn’t make sense of my problems at all or show in imaging) or just ageing arthritis or chronic illness of sjogrens, hypothyroid, Raynaud’s and neuropathy. I was shrugged off with IBS-c/ chronic constipation and given lots of Fibromyalgia-type nerve pain drugs - which had bad side effects for me and did nothing for my pain because it wasn’t Fibromyalgia.
So all I can really advise is that you hang in there and keep pushing because getting into the right treatment for the right condition is key I’ve found.
I’m lucky too to have finally found myself with really good clinicians - but I’m aware that this has taken about 12 years to a lifetime of being pushed about, misdiagnosed and neglected. As I say most of my serious problems are in my paralysed gut and are at last diagnosed correctly and managed as best we can. My dermatologist recently announced that I have “a look of scleroderma” now in my face and insists this is the disease that’s progressing. Others eg my rheumatologist, hedge more because of the overlap and normal nailfolds (last tested 2 years ago). I’m antibody positive for scleroderma but have biopsy histology of Sjogrens so it’s classed as overlap syndrome so far.
But I like to think I’ve learnt to be as positive as possible about living with some ongoing diagnostic and prognostic uncertainty and a lot of chronic pain. So I am starting to reinvent my life to accommodate never quite knowing what is around the corner health-wise. I can’t tolerate pain meds but keeping my Raynaud’s managed with the right clothes, bedding and treatments seems key to managing my pain. And also making sure my diet is soft or liquid and low fodmap and the right amount of laxatives and colonic irrigation have proved invaluable - but are always a work in progress. Things change - symptoms change - some worsen but others happily vanish.
Meanwhile my tip for waiting is to use this difficult time to try out what helps or triggers symptoms re clothing, posture, food, drink and exercises. The expression “use it or lose it” actually does make sense but I’ve had to find my own personal ways of getting it done!
Getting out for regular exercise and fresh air once a day - even if it’s hobbling with a stick or walking frame - is essential for my body and mind. However I’m lucky to have a very supportive partner who has taken early retirement to look after me - so we usually dog hobble together slowly. I try to focus on little pleasures such as better weather, sounds of nature around me, skies above and clouds and not to dwell on health stuff - but it’s often hard.
And if I have to fight and pester clinicians then I darn well do because I’ve learnt that it’s the only way. Best of luck with your journey and don’t be afraid to be a demanding and proactive patient until you get the answers you need and deserve.
Thanks for your response and understanding, I may have replied to you already, I have had a few responses and as I am new to the site not really sure what I am doing.It seems there is a lack of understanding from GP mine puts on my sick not polyarthralgia and didn’t even want to issue new medication when I had constipation as a bad side effect from Amitriptyline.
Yes GPs are important as gate keepers so a good one is worth their weight in gold - but even these are very overstretched now with all the staff shortages in primary and secondary care. I moved GP practices to the only other serving my postcode and no regrets. I quickly built up a good working relationship with my new named GP and as I’m medically “complex” he seems to be my main point of contact via online system - especially if it’s anything relating to my scleroderma gut. I’ve only seen him in person once in 18 months since I moved. I’m pretty good at asking now for whatever I need and I think he trusts me to know my own conditions well enough now. After all I have lived with them 24/7 for years!
The problem is, as you say, that it’s only when symptoms become more severe and damage has occurred - that a diagnosis will finally emerge. And then clinicians will often shrug and say “well there’s nothing can be done now so it’s just a case of helping this patient manage as best we can”.
That’s the stage I’m at with such a late diagnosis since onset. I wouldn’t wish my gut problems on anyone but I’m resigned to the idea that very rare condition patients often end up in similar boat or even worse with other serious organ involvement.
Sometimes the drugs they use cause worse problems than the disease itself so it’s important that the right diagnosis is made and systemic sclerosis can often evolve slowly. It’s usually only diffuse which progresses fast and then diagnosis is likely more obvious as lungs and kidneys and ulcers with potential loss of digits can rapidly arise. So I do also understand the need to prioritise these patients for clinic appointments too.
All Locums at my practice at the minute , so no one contact to be relied upon, I think they are sick of me there, think the receptionist think I’m hypochondriac but I know it not. So more chasing i am afraid.
Hi Buttsy, I’m afraid it can take some time for them to reach diagnosis especially if your symptoms are not obviously shouting one thing or another. I’m now over 20 years into my scleroderma journey and it was probably 2/3 years before I had a definitive diagnosis. I know how worrying and frustrating it feels. Be reassured that a positive ANA on its own is not indicative of a scleroderma diagnosis on its own. They will be looking for more specific symptoms. Treatment very much centres around symptoms anyway. I am lucky in the fact I don’t need immune suppressants as I have no lung or other organ involvement. I take amitriptyline and nifedipine and that’s it. I also have fibromyalgia as a secondary diagnosis and I basically manage that with lifestyle changes. Please try not to worry to much as stress is definitely not good for fibromyalgia and autoimmune disorders. Self care is a priority. I hope you get some answers ASAP!
Thanks you for your response and guidance, it’s seems quite normal to have to wait between appointments and further testing from the replies I have achieved, however I may look into getting help sooner as it is causing me stress and anxiety.
Sounds familiar with lack of categorising and therefore lack of therapy. Also have a high ANA, but lack confirmatory lab test for scleroderma. Fingers and toes fairly immobile but the general fatigue is the worst. Thankfully I’m retired with a very supportive wife but I’ve gone from very fit and active to a bit of a couch potato. I walk (slowly) each day and use weights, Swiss ball etc but aware I’m losing muscle bulk at pace. The thought of another 8 months to reassessment is worrying hence I’ve chosen to go private with my GP’s blessing.
Staying positive isn’t easy but accept it is essential.
Update: I had a seizure due to a high BP and spent 4 days in HDU then 4 in Renal. Finally diagnosed with a “rare” form of Scleroderma (Scleroderma Renal Crisis).
Happy to say I’m home and on correct therapy and already showing signs of improvement of my original issue.
I will keep going , have had issues for years, IBS , acid reflux, shoulder and neck issues, rynards, sciatica. TMJ the list goes on but these have all been managed separately, my Rheumatologist just says don’t worry and they don’t seem in a hurry but as you say I want the right treatment that helps the symptoms. Thanks for your support and response I appreciate someone listening who as been through the process.
I think I am quite unusual and I was diagnosed really quickly following a blood test carried out by my GP ( following something completely unrelated) He said my ANA results were not as they should be and referred me to Rheumatology at my local hospital, where I was diagnosed with Systemic Sclerosis, as soon as she asked me some questions and looked carefully at my nails and hands.
I think I was lucky with my diagnosis too. Lots of my symptoms came on rapidly and my gp ordered blood tests, including inflammation levels. Within 2 days I had a phone call to go to Ambulatory care at my local hospital, where I had loads of tests - pet scan, echocardiogram, bloods, EMR , ECGs and within 10 days I was diagnosed with S sceloderma,lupus and myositis and put on medication immediately - prednisolone, hydroxychloquine, mofeteil mycophenolate, alendronic acid. I certainly rattle now,
Like you I felt that my GPs would be thinking I was a hypochondriac and even, members of my family and friends. In fairness to my GP and trying to take a balanced view of things, I don't think they knew what Sjogren's, was and I thought I had a thyroid problem because many of my symptoms pointed that way. The frustrating thing for me was my blood tests came back normal but I knew what I was going through every day. I tried diets and I paid for allergy tests, I was like you getting to my wits end. I went back to my GP and finally one of them sent me to a Rheumatologist. He was very sympathetic, but he also said no it's not Sjogren's. So I had been doing research online and I asked for a Lip Biopsy and maybe I struck lucky but he agreed to do the test. My lip biopsy came back as positive but even on the letter to me with my results was the words possible Sjogren's. I have questioned this and both Consultants I have seen subsequently say yes, it said that but you have it, but it's not gone into a critical stage. I was even asked straight away to take part in a regional research programme. So, I have been confused ever since. I was offered Hydroxychloroquine but I wasn't ready to go down that path. I have paid privately to see an excellent Consultant and even he said, he thinks with the Raynaud's which I began to develop and the Sjogren's result that it's possible there are other auto immune factors going on. I have never been tested for Scleroderma.
I have found that when you tell members of the medical profession, I'd say 90% of them have never heard of Sjogren's. I truly believe that's the crux's of the problem. I got the best result from going Private and seeing the Consultant I did but Im still coping on my own basically and there is no cure Buttsy, it's learning to cope with it. As one person said to you in a reply, the medicines can be worse than what you are suffering.
I really feel for you, it's a struggle and frustrating but you are not a hypochondriac. Try to find someone who will listen and tell them that you'd like a second opinion from someone who specialises in this field.
It sort of a relief to know I am not the only one, but the frustrating and waiting is awful. Then new symptoms appear and you start wondering what next.
Almost exactly a year on from my first symptoms I’m on treatment (rising strength of mycophenalate for 4 months then methotrexate). I simply got a copy of a letter from rheumatology / respiratory to my GP to start. NSIP is mentioned although my breathing is very good to date. Started on therapy last week on my 70th birthday. So far no effect noticed but thankfully no side effects either.
Could I ask those that are on treatment if / when they felt relief and the nature of the relief?
My blood test for Scl 50 was consistently negative so I remained an unconfirmed scleroderma mystery for about a year. Not until I had a seizure and admitted to hospital was I tested further for rare types of scleroderma (Scl 75 and Scl 100). These came back positive for Scleroderma renal crisis. Now on targeted treatment which also allowed us to stop hydroxychloroquine and fine tune mycophenolate strength.
A few months on and symptoms have improved. It is worthwhile requesting extended screening for rarer forms of Scleroderma if being told test is negative.
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