Just got copy of letter that consultant sent to doctor.
Wants APS antibody tests done again, as seems to think symptons could well indicate APS.
But (more scarily for me) he seems to have put scleroderma back on the table, on account of Raynaud's, GI problems, swollen fingers etc. Tbh scleroderma is pretty much the illness I fear most in teh world.
Its two years on since started getting symptoms and health started declining, and life fell apart. I think I might be starting to crack up. Anyone else felt like this and if so how did you cope?
Thanks
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charlieab
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I have forgotten if you see a real good Specialist, you know such a person who is specialized on autoimmun illnesses like HS/APS, Lupus, Sjörens, Thyroidea etc and even fibromyalgia are sometimes mixed up with the first ones.
It is not easy to distinguish between these illnesses as they go hand in hand and are easy to miss if you are not "established in the field" so to say and very few Rheumatologists are.
So first of all you have to get such a Doctor I talk of.
When I read your earlier questions I can see some neurological symptoms very typical for HS/APS. Many members are tested negative to the 3 antibodies (seronegative APS) and later on positive. I think the Specialist should let you have a trial of LMW Heparin and see if you feel better. Even if you test negative next time.
Are you on a low dose of Aspirin today?
Also do you have relatives with these illnesses as some may run i families?
When you finally get an answer (it is a fight really) you will feel much better so never never give up.
Also you have been in a lot of different difficulties so it is not a wonder if you feel depressed.
Hope you stay with us here as we are here for you to help if wi can. Hope so.
Hope you doing OK and enjoying the Swedish summer.
I suspect that the guy I saw is one of the top guys in Wales for inflamatory rheumatic conditions. I dont think that HS is a specailism of his but he seems to be very knowledgeable about it. I guess if it is HS then I will need to be refered to a specialist in London, Britsol or Bath. Im not sure that there is one in the whole of Wales. Wales, especially the part Im in, is better served for vets than doctors I think.
But for now he seems like the best person to sort out what is going on, including whether its scleroderma. He has requested a lot of tests from the GP, including (on Mary's suggestion) thyroid ones.
He actually said to me about a warfarin trial to see if it helped and so aid a diagnsois but wants to wait for the test results first. I aeekd him about aspirin in the meantime but he said it would muddy the waters. Though Im not 100% sure how.
I dont have any relatievs with autoimmune conditions (with one posible exception). But interestingly, at the place Im staying, one of the other two people developed raynaud's two years ago and livedo and the other person seems to have livedo too. Maybe there is something environmental. I have suggested this but they have pretty much dismissed the idea.
Thanks for your kind words Kerstin. Its really appreciated.
It was but hasnt been for a long time. And also Im in west wales which I dont think had any coal mining.
If anything it might be that the place Im at (which use to be a farm house with lots of out buildings) has a lot of broken concrete, like crumbling yards and trackways. Could just be a conincidence I guess that three out of three people here have autoimmune symptoms
I should probably stop searching for explanations I guess, as will never know for sure.
I'm doing fine. But my visit to Cleveland clinic 's Functional Medicine's did result in the knowledge that I have high levels of five different heavy metals including lead and arsenic. The levels are not "emergency room toxic" so my insurance company doesn't care. But I do given the probable connection between toxic metals and dementia, autoimmunity, and cancer. If you are curious, a company called Genova testing will analyze your urine. But this must be done after you take a prescription which pulls some of that lead out from your tissues and sends it into your kidneys. Here in the states, I had to pay privately for all this because my insurance company would not cover it. I'm guessing it's the same situation over there in Wales. But if you are curious enough to see if there is a connection, one of your doctors might share your curiosity and write the prescription assuming you're willing to pay for this. If my memory is correct I believe the chelating agent I took to pull the heavy metals from my tissues and send them floating about in my bloodstream is abbreviated as DMSO. ???
Sorry to hear about the heavy metals. I can understand the dseire to test for these. Do you think they are the result of being in a mining area? Ive inquired about getting the water here tested, as the pipes were laid down soemtime ago and I cant ruleout some lead sections somewhere along the way.
Im tempted to ask about the urine test but kind of feel that I'll stick to the tests that have lined up for now. Not sure that I want to know what could be lurking in my body atm, other than autoantibodies.
What I realised after reading your post is that Ive pretty much blamed everything for what has happened to me, from DIY, to diet, to overwork. Ad so evrything has become kind of tainted with blame, including things that I enjoyed. tbh I probably do need some heavy duty counselling!
I was amazed to find that I had so many toxic metals. My doctor, who knew I had grown up in a coal camp, was not. She expected the scary results. I've done some research since then and I suspect that it was the slag dumps. There were six or seven close to my house. If you don't know what they are – they're coal refuse that is put in a big pile - big as in up to 100 feet deep --and they can catch fire spontaneously and burn for years and the smoke has a lot of heavy metals in it.
England but brought up in South wales. We did go past slag heaps in the nearby Rhondda Valley. But most of these were cleared up after the Abervan disaster in the 1960s I think. It was where a slag heap slipped onto an in use school.
The impression I get is that the hot spot for autoimmune conditions in wales is (perhaps not surprisingly) Port Talbot, which use to have the heaviest concentration of steal smelting and chemica plants. As a kid going past it you could see clouds of yellow smoke hanging over it and it smelt like a classical description of sulphurous hell.
Does the doctor think that the levels in your blood pose any risk? And will they be able to reduce the levels? I did a quick search on the internet and there do appear to be quite good methods for removing metals from the blood. It also said somewhere that probiotic diet helps. No idea if that is true!
Hi, is the consultant doing all three tests? Plus any others probably suggested ie the B12, D, Iron and Thyroid, as it would be good to test everything Also if your levels of stress over all this increase, maybe some counselling support, as you do have a lot on your plate. MaryF
yep he is; apart from B12, which has been done already. He seems on the ball and like he is going the extra mile. I think he can see that the pressure is starting to tell. What I did wonder about was whether should also have the anti-prothrombin anti-body test, as around 60% of people with APS test positive for this?
You are right about counseling I think. I feel like I have a lot on my plate atm, apart from gluten of course.In restrospect, I suspect that stress might ahve played a big part in the progression of symptons, maybe through facilitating the movement of cytokines across the blood-brain barrier. But is darn hard not to eb stressed now. Even thinking about cytokines and stress is making me more stressed!
Hope you are doing OK today. Is pretty sunny here in Wales and might go outside and try not to think about my immune system for awhile.
Thanks for your reply and kind words. You are right I think. I know that I have to salvage what is left rather than focus on how I hit the rocks and beat myself up the whole time for not having steered more watchfully.
My list of things to do include signing up to volunteer at the nearby hospice and I know that helping others is the best way to begin to feel more purpose and self-appreciation. Though god help them if the hospice puts me in charge of cooking!
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