I haven’t got a diagnosis yet, but I’m begging someone to help me as I am rapidly declining. I have numerous symptoms. I have been on a waiting list to contact a rheumatologist in April. But everyday, this is getting worse and worse.
@@SassyO100I waited 7 months to see the rheutomaolgist also. She was dismissive and barely looked at my skin changes .My ANA was 320 and had speckled anti centromere pattern. I have severe Raynaud's also. I doubt she will ever help me.
@@vivavita3769 I’m sorry you had that experience - please don’t give up. It may be beneficial to get another doctor to assess you or ask for you r skin (full body) to be examined. I finally met with a Rheumatologist at UCLH London and she was pretty thorough in her assessment as I’d been without medical help for over 3 years. The consultant did a thorough full body skin and limb check and a very basic muscle strength check. What this doctor did do to help me was give me a diagnosis of Long Covid for starters then said she think the covid virus created the antibodies I was presenting for other diseases which she’d seen before in other long Covid sufferers. She said it appears that my presentation is changing ie not developing fully into SSc which is good but she did full bloods,L to check my antibodies, tested me for a multitude of viruses HIV, and all the HEPs etc. Chest X ray, Heart Echo, Then sent me to a Scleroderma specialist department at Royal Free Hospital in London to do heat thermal testing to rule out Raynaud’s even though I previously presented with that for a year. What I’m saying is don’t give up on the first doctor or ask for what you want as I said to the Rheumatologist I felt dismissed by my GP Doctor and that I’d had no physical examination and I knew I was experiencing pain and circulatory issues that were painful.
@@vivavita3769 i have a Followup in December 2024 so 8 months after first consult. I’ve had no medical intervention as there’s not much on offer interms of treatment for Long Covid. My vascular issues have been subsiding in must admit but my hands still present stuff and painful in the mornings.
I haven’t got a diagnosis yet, but I’m begging someone to help me as I am rapidly declining. I have numerous symptoms. I have been on a waiting list to contact a rheumatologist in April. But everyday, this is getting worse and worse.
Hi Andrew,
You can connect with us at (800) 722-4673 or info@scleroderma.org for support and resources during this time.
Can taking vitamin D and fish oil supplement be of any help with this condition, or light therapy.
My son was told he has borderline positive ANA score and they are speckled. What does this mean please?
I’m the same - my ANA mine was described as weak positive. But all other markers suggest SSc CREST Syndrome
I’m still not in the No as I’m still waiting 7 months later for my Rheumatology consult which I’ve now been told it will be next year.
@@SassyO100I waited 7 months to see the rheutomaolgist also. She was dismissive and barely looked at my skin changes .My ANA was 320 and had speckled anti centromere pattern. I have severe Raynaud's also. I doubt she will ever help me.
@@vivavita3769 I’m sorry you had that experience - please don’t give up. It may be beneficial to get another doctor to assess you or ask for you r skin (full body) to be examined. I finally met with a Rheumatologist at UCLH London and she was pretty thorough in her assessment as I’d been without medical help for over 3 years. The consultant did a thorough full body skin and limb check and a very basic muscle strength check.
What this doctor did do to help me was give me a diagnosis of Long Covid for starters then said she think the covid virus created the antibodies I was presenting for other diseases which she’d seen before in other long Covid sufferers. She said it appears that my presentation is changing ie not developing fully into SSc which is good but she did full bloods,L to check my antibodies, tested me for a multitude of viruses HIV, and all the HEPs etc. Chest X ray, Heart Echo,
Then sent me to a Scleroderma specialist department at Royal Free Hospital in London to do heat thermal testing to rule out Raynaud’s even though I previously presented with that for a year.
What I’m saying is don’t give up on the first doctor or ask for what you want as I said to the Rheumatologist I felt dismissed by my GP Doctor and that I’d had no physical examination and I knew I was experiencing pain and circulatory issues that were painful.
@@vivavita3769 i have a Followup in December 2024 so 8 months after first consult. I’ve had no medical intervention as there’s not much on offer interms of treatment for Long Covid. My vascular issues have been subsiding in must admit but my hands still present stuff and painful in the mornings.
DuBuque Creek