new and hello

[Spook257]

I’ve never posted or joined a forum before so bear with me. I was diagnosed with reynaulds four years ago which has gradually got worse. Multiple, daily attacks and ulcers and sores on hands. No meds have helped. Have recently had five days of ileoprost but still getting daily attacks and new sores. Don’t think it has helped much.

I think there is something more than primary reynaulds going on but the ANA is negative. Other symptoms include waking up with numb hands which can reoccur during the day, swollen fingers, lumps under skin (last about four weeks then go), abnormal liver test blood result and red blood cells too big (this can be caused by alcohol but I don’t drink. I also sometimes have trouble swallowing but not all the time and I get excess stomach acid. I think there is a wider auto immune thing going on but not sure given the ANA result. The sores on my hands seem to emerge in waves and can come on really quickly.

I’m hoping being part of this community may give some insights.

[Buttsy]

morning and welcome Spook27,

Maybe you need further investigation, did you have ENA blood tests done I believe these include anti ro and anti La, ENA can highlight other autoimmune diseases such as Lupus and Sjogrens.A nailfold capillary for systemic sclerosis .Are you under the Rheumatologist?

Take care,

it can be confusing and frustrating trying to get a diagnosis.

[Spook257 in reply to Buttsy]

Thanks for the reply. I am currently being investigated by a rheumatoid. Had nailfold tests but don't have result yet. Doppler was OK. One anti-body marker came back as positive (sorry don't know correct terms). I've googled it and it seems to be linked to some form of myositis and there is one linked to reynaulds. Have appt on 24 March so hope to find out more. Many thanks for responding.

[Buttsy in reply to Spook257]

Good luck with your appointment, hope you get some answers.