I have tried taking Plavix which was to severe. I have been good on Paleo diet no strong green veg. Asparin blood pressure tablets. New doc suggested a trial of Ketosis to help with the demilination. I have SLE APS and MS also have Mitral Valve Prolapse. MS came up in the brain MRI but not serve. I am blonde and yes there was a brain there. This group has been so informative. JUst wondered about good and bad of Ketosis. MY buddy paediatrician said might cause kidney stones ???? But mild Ketosis might be worth trying. ?????
I will be a Guinea Pig lol. I am really good considering I look good feel good most of the time just want to slow the body down from damaging itself.
I enjoy every day do some fantastic things and love my life.
THere is always someone who is much worse than me. glad of any tips or hints....
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LindaMorrell
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Sorry about the Auto spell it drives me crazy. Just like finding solutions for sharp pains numbness tinnitus and the rest of the things auto immune diseases do to us. I would be really glad to know if any one out there has mixed a Paleo diet with Ketosis in mind.
Paleo diet doing great, miss my dairy, sweet stuff etc. But my wellbeing fantastic. Should have done it years ago. To give that extra push because I was not good on plavix and I know I need to do something. I am going to try ketosis which some say helps the Mylin Sheath ( I can but try) I see an immuniologist on the 3rd. Then the dietician on the 8 th May. I think it's more or less no carbohydrates from what I have learnt so far. I was warned about a potential problem with kidney stones with this ketosis diet but will find out on the 8 th.
I want the damage caused already to get better which I don't think it will. However I have to avail myself of all knowledge and make the best choices I can to prevent more damage. Let's see what Ketosis has to offer. I will keep you posted.
Right now I am making a paleo cereal. And paleo protein ball mix. I have found a fantastic bread from a local chef and eating these rolls makes me feel normal lol
Therefor I wonder if you have got a Specialist of HS who is specialized in these autoimun illnesses like SLE/Lupus , HS/APS (which you say you have) Sjögrens syndrome and Thyroidea-illnesses. These go very often hand in hand and MS is often misdiagnosed and mixed up by a Doctor (often a Neurologist) who does not know HS very well.
If not, do look for such a Doctor (often a Rheumatologist). I also wonder if you have high bloodpressure as you talk of a mitral valve prolapse. Why I ask is because I had exstremely high bloodpressure in atacks and sometimes chest-pain also before Warfarin and today I have Pulmonay Hypertension and leaking heartvalves. A symptom of HS.
You are hitting the nail right on the head. Had great doc years ago Mr Phillips who moved to NZ from Yorkshire UK. Found I had SLE. He was great Physician. Had good few years no problems. Even though I had numbness in my face. APS was suggested then Years later I had Various rhumatologists During a lot of pain with rheumatic issues. All good with that now and no drugs. Pains would subside after 12 hours. Rarely gave in and took Celebrex which worked . Also took geletin which I believe cracked it. No more pain
Few good years again - APS was found but no one worried about that???? missing damage to Mylin sheath. Found heart valve problems because of high blood pressure. Then went onto find Mylin problems . I have a good life and lucky I found out about all these issues giving me time to understand and do something about them.
All sounds horrendous but believe me I am good. No pains apart from the odd sharp head pains. Experience some cramps. Tinnitus slight numbness down one left side of face and body.. slight niggligling head ache. Only on aspirin, blood pressure tablet Vit d, fish oil and few vitamins. Not sure if they are working but I feel good. So live in hope......
Lot of worse stories than mine.... this site is very helpful to help me, helps me understand.
Did they find the three antibodies positive or only one or were you diagnosed on a familyhistory or by symptoms?
As I suggested you must look for this Specialist! You need to try perhaps LMW Heparin or Warfarin to see if those sharp head pain and bad Tinnitus will get better with a real anticoagulation-drug. I am sure they will when you reach the right, steady level of INR
Today you are only on Aspirin (not an anticoagulation drug but an antiplateletdrug that works in quite another way) and that will probably not be enough for your bloodpressure and heartvalve-issues. I bought a blood-pressure machine. Now my bloodpressure is ok but now I have Pulmonary Hypertension which is a rare symptom of HS. I have probably had a lot of micro-emboli when I had those attacks and chestpain.
Get this Doctor (very few of them) as soon as possible and also ask for an Echocardiography with doppler if you have not already done that. You are also talking of neurological symptoms from HS that can be treated with anticoagulation. I am selftesting with Warfarin and need an INR of 4.0 to feel ok.
Thank you for that. Never understand all the tests. Lumba punctucture showed up MS. But not a high finding. Brain scan showed lot of lesions in the top of the brain and plus lot of old damage. Very few lesions at bottom of the brain. Had Lupus issues 1992 with uveitis ivietus and iritis Smal attacks in main organs all that settled with steroids. Aspirin was diagnosed for APS years ago and told to continue. Because the aspirin was not enough went on clapidogrel . Went into black blotches once with Plaquinel
The clapidogrel made my mind go funny with my memory. Plus a horrendous internal bleed in leg after a bump. My blood pressure excellent as I monitor it regularly. Told the tablets for that also strengthen the heart valve in some strange way. Never had heart pains just high np before tablets.
I will see the heart guy and have a good talk. He did say my Mitral Vslve issue was just one of those things even though I believe otherwise.
I am seeing immunologist next week she is suppose to be good. Will find out more about warfarin.
Can I stop if it doesn't work????
If you ever hear of HS specialist in Qld I would be over the moon. I personally would be happy with good Physician. Can't find one of them either
I think professionsls see me and my minor issues and think if it's not broken don't fix it. !!!!!!!!
I really appreciate your advice. I have done brilliant with no serious drugs apart from odd occasions through my journey of auto immune.
I was told by a lupus group years ago it's the medicines over time that give major issues the Lupus seems to run with a problem then blow itself out. This has been the case for me apart from finding the lesions on the Mylin Sheath end of last year. Now the specialists seem to agree treatment for SLE and APS are usually quite different. ???? Bit like a mine field........
I will say that you could ofcourse also have MS (but that is unusual). The symptoms of HS and MS are very much the same and Neurologists tend to mix them up especially as they do not often know of HS and understand that we must thin our blod. The mitralvalve-issues could be one of those things ..... but also a symptom of HS.
If I were in your place and know what I know today I would definitely se that Specialist where he could be ..... You will not regret it.
How are you doing now? I had the mitral valve problem and had repair, blah, blah, blah. They found Libman Sachs( disease common with APS). I like you are pretty much symptom free..we’re two of the luckier ones ... I suppose, lol. Interesting to see how and what you are doing now👏
G’day. I am good. Glad you are too. Good to here your heart op was good.
A few little weird things happen these days Eye vision clarity in and out heavy legs occasional temple pains. As usual things come and go believe me none major. Diet hard to stick too but I do pretty ok. Just got back from UK before going my lovely Immunologist suggested injecting plavix to fly. Helped enormously. Black belly with bruising but it was worth it. Weird little side effects. In the veins and I think this may have caused the pain in the temples. I seem to be dealing with it and it’s getting much less often. My breathing is good at the moment. Not that I ever gasp, it is just another come and go symptom.
So many variables. It’s totally amazing to learn of people all around the world following the same health pattern. If the specialists follow this info I am sure they will eventually break through the reasons why it is happening.
I am sure my mum had Lupus. Prob APS to,when I was a child mum always had some serious illness but always seemed to get better quickly. One major issue for her was alopecha loss of hair. She went through hell with many injections, and got through it. She is now 87 in a nursing home with on going dementia symptoms. My poor aunt 86, mums sister,has now been in a home with dementia for over 6 years. Like a living corpse so so sad.
I just live my life to the full. Deal with it all step by step. In the next few months I will get checked by the immunologist and the new heart specialist. Hopefully all will be good, in the mean time I work full time and will be off to celebrate my 60 th in November
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Anyone with a similar experience?
Fever
Today is a good day, diagnosis at last!
Do you automatically get tested for APS if you have a clot ?
