Thoughts Please

[Mistermeaner]

Hi, first time poster here. Any thoughts on the photo please? All bloods normal and negative ana. Huge fatigue and non specific aches along with several minor neuropathies (hands, feet and knees) and trigeminal/occipital neuralgia.Both feet are painfull, GP says it's plantar fasciitis, physio disagrees. Also medial epicondylitis (golfers elbow), both conditions are unresponsive to normal physio treatments. I do experience symptoms of raynauds in both hands and feet. The attached picture is of my right index finger (dominant) at a reasonably good time insomuch as the cuticles is complete and un damaged, apart from my thumbs, all other fingers are pretty much in the same condition. The haemorrhages are in all, as is the overgrowth of the cuticle. My father is confirmed with Sjogrens, Lupus and Celiac. My sister was a confirmed Lupus sufferer but we lost her last April to other health issues. Any comments welcome.

[Hidden]

Hi there. It certainly looks like you have the nailfold capilliary changes associated with connective tissue diseases to my untrained eye. I’d say you need to get a rheumatologist with an interest in vascular diseases to examine those with a high magnification to take a look at the shapes your nailfold changes demonstrate as this can contribute to the overall diagnostic picture.

I have Sjögren’s (Seronegative - diagnosed by lip biopsy and raised immunoglobulins plus high inflammation, neuropathy and sicca) and systemic sclerosis overlap.

Ironically I am opposite to you and can’t get full diagnosis of scleroderma, despite a highly specific antibody and .+ANA, because of my normal nailfolds. We need to merge perhaps?!

To be honest I think my main connective tissue disease is systemic sclerosis which is mainly affecting my GI tract top to tail (confirmed GERD, Gastroparesis and chronic constipation). But I’m not pushing for a diagnosis because I’m treated systemically anyway now and really like my new rheumatologist - so I don’t want to go back to the scleroderma/ CVD/ CTD clinic.

I think some Rheumatologists are better detectives and able to think outside of the box - where others can’t.

With your negative blood work and my normal nailfolds we need doctors who aren’t overly rigid in their thinking and who view rheumatology as an art as well as a science.

[Sosie]

Ask your GP to refer you to a rheumatologist who specialises in scleroderma. You have pretty much exactly the same symptoms as I did at diagnosis and the cuticles were the big give away for me too. ANA often gives false negatives and the lab needs to use the right methods. I have limited cutaneous systemic sclerosis. X

[Someoneiam]

I got an infection of the nail bed and my finger turned out to look like that. But would defiantly speak to a GP as I was required to take antibiotics. But cant be sure what it is. Hope this helps.

[Someoneiam]

Would also get referred for the other symptoms as they sound like they could do with examining.

[newbe in reply to Someoneiam]

Hi, If you can get your gp to refer you to a specialist hospital that has an auto immune/scleroderma unit. I was lucky enough to go to the Royal Free in London who do medical trials and have a brilliant rheumatology unit. They look at nailfold capillaries in detail it was the one hospital that diagnosed me specifically and gave me great optimism for the future. Good luck.

[Sanmateogirl107]

try wild lettuce extract i use for scleroderma. lupus. it works great please try and let me know (ebay) wild mountain herbs has it. love julie. break twig of rosemary crush it under warm bath tap the smeel will lull you into a deep sleep.