This is the best video I've seen on MCTD. I've changed almost everything in my life and I absolutely believe that gut health is a direct culprit of MCTD.
I wish my rheumatologist was this thorough when she diagnosed me with mixed connective tissue disease. She mentioned that I may have early onset lupus and when I asked if I could be tested she told me I didn’t show enough symptoms to be tested. Why would a patient be denied that testing if there is the slightest speculation?
Yours sounds like mine. Although I don’t think it’s lupus. I don’t really have all the skin issues. I have more inflammation in my hands ans feet the pads hurt to touch anything! Wether soft, hard, heavy light. Can’t bend them the get done swollen! Or stand due to the swelling on the bottoms of my feet
In 2018 I found out I had an aortic aneurysm. They did an aortic root repair. After months of heart issues my doctor decided to test for autoimmune. I was diagnosed with MCTD in 2019. I have joint pain, fatigue and general feeling of unwell. I have cardiovascular issues like aneurysms, pericarditis and pericardial effusions. Most recently I'm having cognitive issues. Starting to lose my memory and having confusion. We're running tests now (MRI/CT scans) and seeing if my MCTD is causing vascular dementia. It's been an emotional roller-coaster these past couple years and hopefully I can find a way to work through this.
@@gatesbrainhealth2639 thank you. Just one day at a time. I actually got my dads DNA before he passed last year and have my moms as well so I plan on contacting some of the foundations and sending the raw dna in. Maybe itll help in the future.
Elvis Presley had this disease they knew nothing about it back in the 1970’s he died at 42!!!! Hang in there I believe this will be the decade of cures All The Best
I have Fibromyalgia but all tests are negative except I have a positive RNP antibody test, in follow-up too. Is this something I will die from? I am afraid. Side note: ANA was negative as well.
With everything he said, the one thing he forgot to mention is that your blood work will have to be so bad there’s no turning back before you will get anything to help you. It seems to me these people that have positive ANA and positive RNP antibodies could be treated with a small amount of medicine instead of waiting until they’re too sick to care anymore. The United States healthcare system is disgusting and broken.
Same I had symptoms for ten years before I got a diagnosis. The first one I got was lupus and mctd. Would have been nice if we could have slowed it down earlier.
I was diagnosed with MCTD in 2013. I believe suppressing the immune system is not the right way to treat it. It started with respiratory infection that wouldn’t go away. I started using turmeric as an anti-inflammatory and oregano oil for the infection. A few years later, I went back to see my doctor and did Sm/RNP (U1 RNP) test, came out negative.
I use tumeric powder. I buy it as a big bag of organic spice. Cheap. Obviously it is not potent than taking oil, tincture, certified product or real root, but it is better than nothing and easy access.
I have ITP and APS, which have opposite symptoms and make it difficult to control the blood changes. I also had in April a subdural hematoma and a small sub arachnoid but they could control the bleeding in my brain at the end. After some months I had a new blood clot in the left side of my head and my platelets are going up and down but also antiphospholipid antibodies triple positive. I also have had Raynaud since I remember. This Monday the rheumatology told me that I have Mixed connective tissue Disease and they are thinking of giving me a treatment with Rituximab, hoping it control my blood and prevent another bleeding in my brain. I'm so confused and scared. I'm 25 years old!
I have been diagnosed with these::SLE, sjogrens, temporal arteritis(GCA), secondary Raynaud's, Grave's disease, mixed collagen vascular disease, anti-ccp positive rheumatoid arthritis. My Rheumatologist finally said to me that I do have MCTD. Exhausting and frightening 😢😢
I have been trying to get a diagnosis for my positive ANA and problems that have been growing and evolving for the last eight years and now I have seizures and other progressive issues now they say my liver is having problems and I still have yet to have any rheumatologist actually diagnosed me with anything specific or agree to anything or treat me.
I hope you get some answers soon. I was sent to a lot of specialists when I first got sick three years ago. I have some lupus and mctd autoantibodies. Diagnosed with lupus in US and then MCTD when I moved to the UK earlier this year. Pain every day no matter what, GI issues, and swollen lymph nodes throughout the body. Ugh.
Omg. Please elaborate on MCTD with APS!!!!! I’ve been tested to have nothing else, just these two. I’ve been trying for over 5 years to get info on this combination, and need a treatment plan! Help me!
I have APS too. Rheumatologists in US and UK have both told me that daily low dose aspirin is the treatment until you have a blood clot then you are put on blood thinners. I am not a doctor but that is what I was personally told was the "protocol" in two different countries. You may be told something else. Best of luck to you!
I have Sjogrens, Hashimoto's, MCTD, Fibromyalgia, Trigeminal Neuralgia, Narcolepsy, Overactive Bladder with Spasms, Excema, IBS, Tietze's, COPD, ADD, Osteopenia & Migraines. I'm a DES Daughter & had Rubella in-utero. Is that why my immune system is trying to kill me? I'm in chronic high levels of pain 24 hours a day. My Rheumatologist sent me to a pain specialist who wants to do a cervical injection for pain management. Isn't that a temporary fix though?
My wife will be 42 in 2 weeks and at around the age of 29 she was diagnosed with undifferentiated connective tissue disorder.. then by 30 or 31 she was given MCTD and was placed on several different meds to figure out what worked best for her. Raynauds used to be bad.. and by the way this was all when we live in Houston, TX (where we are from). 2014 we moved to the mountains of Colorado and for the most part she has been doing really well up here with the occasional flare up. HOWEVER.. we just discovered that she is pregnant😁. She is extremely high risk due to her age and with the MCTD. We are trying to have an understanding of what this may mean for her now that she is pregnant. We had our 1st child when she was 23 by the way.
I have MCTD with only positive Ana and Rnp, AND FIBRO, esophagus doesn’t work, I have to swallow water to get food down, always have it seems swollen glands and mouth sores, neuropathy . I started have facial monolcous during sleep for months Now, and then started twitching all over my body in October, daytime and also muscle cramps all over body , It seems after ten years on Prednisone that it might have side effects of muscle cramps and all over twitching for me as I stopped the prednisone snd my daytime switching reduced 75 percent, I can take only 2 mg aday at the most .Would different cortisone have same bad effect? I had hepatitis C in the late 70,s and doctors didn’t have a name for it back then, I nearly died from hep C but was young and my body rid itself of the Hep C five years after I had developed it .I have had fatty liver now for two decades.
In 2015 I had a positive ANA test and I was positive for RNP… I ended up getting pregnant and couldn’t see the rheumatologist until about a year later because that was how long the wait was. At that visit the rheumatologist redid test and the ana was negative. I was diagnosed with fibromyalgia. Stopped seeing him because he said there was nothing he could do. The RNP wasn’t retested. Now I’m still having RNP positive but ana is negative.. I’ve had 2 RNP positive test this year and I now have Raynuads. And potentially POTS. My rheumatologist said the RNP is false positive.. but I have a hard time believing 3 test could be false positive! I’m glad you said to question it. I’m definitely questioning the diagnosis.. or it’s fibromyalgia and something else as well.
I was diagnosed with sjogrens fibromyalgia and neuropathy 20 yrs ago now been diagnosed with eds mixed connected tissue disease got inflation of bowel bladder and bowel inconvenience for enlarged red blood cells breathing problems so ill fatigued severe back n hip pain I never get temperatures but when I eat I over heat bad
I had negative ANA and 1:80 positive RNP these results seem odd- any thoughts. I lack clinical symptoms but these tests were ordered because I had a slightly elevated CRP (first time was 19 second 12.5)
@@gatesbrainhealth2639 Can I have an online consult. I can send you my labs that I do have. My original doctor said that I do have some type of autoimmune disorder but she does not know what. I changed doctors because she seemed so nonchalant in what I was trying to tell her and I did not get these abnormal lab results until a month and a half later. So I just saw a new doctor and he did run a couple of labs and he said that I do not have Lupus but I have Osteoarthritis. So how do you explain these abnormal labs???? Lupus runs in my family and even if it is not Lupus I know that something else is going on!!
I was diagnosed what MCTD in 2021 and I did a low histamine diet and found my main food triggers. I have never done any pharmaceuticals or steroids for the condition. I eat gluten-free, have to stay away from tomatoes and tomato products and keep them at a bare minimum, And also cannot drink alcohol very often if it all, And cannot eat leftovers unless it’s within 24 hours of it being cooked. I do get Reynauds in the winter time. When my hands get cold and my feet. I live in Ohio, so the winters are hard on me here. I know when I have a flareup, what caused it . Stresses a big trigger Lack of exercise is a trigger And also not getting enough rest or body repair time. I take vitamin C, vitamin D B12 quercetin every day And I take Aleve when the inflammation is unbearable . I do self massage … Also use castor oil religiously, as well as magnesium spray at night. I’m not completely pain-free or symptom-free, but it is 75% better than it was when it started. When I first found out when I was chasing symptoms, I was having major gut related issues, and my mouth was breaking out in a rash constantly. My body hurts so badly and when working out. I would be so sore that I could not do anything without severe pain. I felt like I been beaten or the feeling you would have after a car accident or impact accident. This all came on me after the Covid shut down . I did not get the vaccination and I will not But I did have Covid and my symptoms were severely increased after having COVID-19. I believe I believe Covid has a huge role to play in the increase of auto immune diseases in the past four years. Almost everyone I know has one Has symptoms of one
may i know the symptoms that you had? cause i recently got diagnosed with mctd but my symptoms is just joint pain, stiff neck, tension headache, and light sensitivity
I have Undefined MCTD with Antiphospholipid Syndrome, no other syndromes. It’s so rare there’s zero information on it. I’m allergic to sulfa, therefore allergic to hydroxychloroquine sulfate. My liver enzymes are three times normal, therefore cannot take methotrexate or handle pain killers. My symptoms are different than other people. I have red spots all over my feet and go up my leg, on my hands creeping up my arms. I also have red spots on my face. I had biopsy, it’s not vasculitis. No one can tell me what they are. Also, my feet, legs, hands and arms are skeletal. Loss of muscle and some neuropathy. I get muscle aches, not joints. Large and small, my muscles wear out during the day, depending on my activity level can render me immobile by the end of the day, and hurt so bad it’s hard to sleep. I must control my physical activity, limit to short durations, about 20 minutes, usually house cleaning, then rest for an hour then go again until about 3-4 pm in which I require a nap or quiet time, no movement, playing on my iPad, to have enough energy to cook dinner. My lower back gives out first, unable to hold my own body weight. Any stress or extreme physical actions will cause me to get a head ache, slight fever, and render me unable to do anything the next day. I used to have esophageal problems swallowing food, spit up, and wretching. But now take large doses of Potassium and magnesium to counter. I had to have my esophagus ballooned because it was cork screwed from damage, and still have visible heavy scarring seen on a CAT scan. I prime my esophagus before I eat, by drinking water first. My disease attacked my female organs, had them removed, then appendix, then pancreas. My kidney function in borderline, but no issues, I have a inoperable nodule on one of my adrenal grands. In theory, there are nodules around my lungs and other organs, but no issues. Speaking of adrenaline, if I get stress or excited, do heavy exersize, I get physically sick and spit up. To counter, I was prescribed Amitriptyline 50 mg to keep the stress down, my blood attacks the adrenaline in my muscles. I also get allergic reaction sometimes to eating food, I carry a rescue inhaler, Benadryl, and nose spray with me at all times. I was tested and have no allergies, it’s my body reacting to digesting food. It’s random, one day a reaction to nuts, another day, shellfish, or glutens. I get random uncontrollable diarrhea from something I ate but yes, random. Sometimes it’s caused by stress. My biggest complaint is the muscular pain I experience, and my inability to work or walk thru a store without getting fatigue afterwards. I was a truck driver, class A, tanker/hazmat. After going over the road, I got a job working flatbed hauling equipment, hauling fuel, and driving water tanker in the Natural Gas industry. I trained with Haliburton and was top of the class. As a woman, I could name my price. But fatigue slowly came on, I would spit up in secret, wore an adult diaper, but finally had to have surgery in which i never really recovered. I tried juicing, vitamins, everything I could think of...but I could no longer shift a truck or do the job. This was five years ago. After five (5) Rhumies, over 100 blood tests, and finally being tested by experts at John Hopkins, I got a diagnosis. But no treatment plan, they all dumped me...my case too difficult which may carry liabilities even tho I have good insurance. I go to a regular family doctor a couple times a year to get vitamin level check, organ function, and sugar measured. I’ve gotten my diabetes to a 6.1, and understand it’s this condition I have that is effecting it, not diet. It would be nice to try TPE (therapeutic plasma exchange) I read a medical paper about it being used experimentally for other immune disorders. But then learned what experimental vs common practice means, liabilities, and hospital administrators unwilling to allow for ‘Right To Try’. Cowards. So...I’m dying, slowly, and painfully. I will eventually have a stroke, and early on-set dementia. Any advice would be welcomed. Thank you.
I looked it up. No. The spots I have are like little round spots, not a rash. They started on my feet and now go up my legs, they are on my hands, going up my arms, and a few on my face. My extremities. They come and go, and they burn. Doctors tried me on hydroxychloroquine, but my spots got worse and burned really bad. I had an allergic reaction to the sulfa in hydroxychloroquine. I wonder if there is an antiviral that is sulfa-free? I had to off of it after three weeks. I had a reaction to steroids, too. I’m taking a baby aspirin daily to help with the APS, but my muscles are rapidly deteriorating. I also get ‘bee sting’ type sensations in my feet and on my head. Much neuropathy and muscle spasms. But thank you, I welcome any ideas!
Any chance that you could get to see the doctor on this video? You need very specialized care. You must find somebody to help you. And maybe your diagnosis is not correct either. Also, get a supportive mental help, because that is a hell of a mill to go through alone!!! I lean heavily on my counsillor at the same time when I look help for my body! Because it is hard to navigate the medical system alone and often when I was dismissed by an one doctor, with my counsillor's support I had strentght to continue looking for answers elsewhere. And not every counsillor works well- There needs to be personality match.
Hi. Well, I had two heart attacks, and thankfully made it to the hospital in time, had a stint put in and put on blood thinners. My second heart attack was just a spasm, no heart damage, just bruised. My doctors don’t know how to treat my condition, other than manage my symptoms. I suffer with muscle pain daily. My muscles are not re-building, my hands, arms, feet and legs are very thin. I’m having issues again with swallowing, suffering with hiccups and sometimes spit up whatever is in my esophagus at that time. I may need my esophagus ballooned again. I am here by the Grace of God. Unvaxed, because I think it would do more harm than good. I haven’t had a cold or flu in about six years from taking all the vitamins and zinc. I struggle with having energy to do stuff like housework, so I do a bit at a time and have adopted a minimalist philosophy. I don’t trust doctors anymore, I had a cardiologist try to persuade me into taking the Frankenstein shot, even knowing it would probably kill me. Do not harm, my ass. I can give advice, tho...when dealing with MCTD and the ability to swallow food, ask to get esophagus ballooned, it helped me so much. Also take daily vitamins and have a doctor benchmark you so that your numbers are perfect. You can tweak what you eat, try LowFOD. Thank you for reading my story, I’m a bit long winded on this topic. There are so few of us with MCTD that there is very little information about treatment in medical paperwork for doctors to prescribe a treatment plan for. That’s sad.
Red pinpoint dots are called petechiae. They form when capillaries bleed, leaking blood into the skin, and are indicative of the platelet disorder Thrombocytopenia.
I’ve tested positive for anti smith and RnP (or R something) antibodies. I’ve seen 2 rheumatologists and they never give me any answers. I was told symptoms might be my ADHD meds, the antibodies might be my vitiligo and fatigue is due to narcolepsy (which is absolutely not what’s going on). I’ve had no help and I’m completely lost as to what I should do. It seems that all the doctors EXCEPT the rheumatologist have raised concerns about me having an auto immune disease such as MCD and lupus. I just don’t know what I should do to help the rheum figure out what’s going on.
Anti-Smith is very specific to lupus according to my rheumatologist in the US. I have that, but because I also have anti U1-RNP antibodies the UK rheumatologist says I have MCTD . I just wish that all of the meds they have tried would help the pain. My husband is looking at buying a wheelchair because walking is so difficult now and I have only been sick 3 years, so for me that is devastating. Best of luck to you on your health journey. 🤞
@@elisahayes631 Thank you so much! I am so sorry to hear you are having such bad symptoms! I also had RNP and I recently saw a third rheumatologist who believes I may be in the early stages of Lupus , MCTD or both. She ran a blood test called AVISE and I'm currently waiting on the follow up appointment so I can find out and discuss the results. I hope you can get the help you need as well find a good medication to help reduce the pain you are experiencing!
I wish I could see you. I have hoshimotos but was diagnosed with a connective tissue disorder but I have massive dry mouth and dry eyes among other things. Plaquinel is a joke for me. Prednisone has made me heavy. Now that I’ve weined buff the prednisone the swelling in my hands ans feet are back a year on Plaquinel and I am not sure it’s for me
I have undifferentiated, fibromyalgia and scleritis bad. I'm curious is scleritis will throw me into the mixed version. I have dry eyes and mouth but no dr has further diagnosed of Sjorojans. Shouldn't that be a dx because I have scleritis severity? I'm on infusions of Rituxan and on Imuran . It's very hard to get multiple diagnosis which could help treat myself best. I've had this for 10 years now and it's accelerated more in the last 2 years. Thank you for your time.
I’ve just tested positive for anti RNP and also positive for Lyme WB p93, p58. & p41. No treatment yet, waiting on doctor .. ugh What test should I be directed to now?
Eat clean and listen to your body. Walking helps. Fever and body pain is telling you to take it easy. Keep yourself warm. Your life is different but don't be scared. Be strong and don't let it get you down. I was where you are and I understand the fear. I'm taking plaquenil, baclofen, and prednisone. I've cleaned up my diet with eating fresh, no preservatives and additives. There needs to be more research for us. The diagnosis takes too long and there are too many people suffering.
59M, Hashi's (treated), with RNP antibodies around 10. Severe fatigue is the#1 issue. Muscles fail to work #2 issue, fingers/skin turns red/thick white skin, Pred 10mg is a huge help, clean diet, Anything else help?
I have signs of and symptoms of autoimmune I have for many years I was told it was fibromyalgia for years till I was around 39 then a Dr said I think it’s Ms so now I’m being told that it’s more then likely connective tissue disorder smh and my sed test was high but my ANA was negative I’m in pain and can’t hardly walk at time I really need some help :(
That was *very interesting* to hear about the prednisone! I have many symptoms and waiting for my first appointment to rheumatologist, but when I ended up to emergency room and got steroids, they worked like MAGIC! So that is very positive to know that I respond so well for them. Unfortunately doctors do not prescribe it to anybody who is not properly diagnosed in here. But this did give much hope that if I have this diagnosis, I will make a full recovery 😊 I am very lucky if this comes true!
Please help me save $1800 for a second opinion (almost impossible to see another rheumatologist in NY when you're currently under the care of one). Rheumatologist told me that because I am positive for RNP (600 u/mL; standard range 0-99 u/mL) that alone means I have MCTD. I have sx of both SLE and SSc (CREST, APS, myositis , photosensitivity). I also have positive and extremely elevated anti-dsdna, anti-ssa, and anti-smith ab. Also increase histones. I'm starting to think I'm misdiagnosed and that I actually have Lupus and SSc independently, not an overlap which is probably why I'm not responding to current tx for the last 2 years. In your opinion, could it still be MCTD with these other positive antibodies?
Thanks for an insightful video on MCTD. MY wife was diagnosed with MCTD in Jan 2019. She has been on 1) tab nifedipine 10 mg OD 2) Tab telmisartan 40mg OD 3) TAB Predniaolone 2.5 mg OD 4) Tab Methotrexate 10 mg weekly 5) andHCQ 200mg HS apart from folic acid calcium Is the treatment okay
Mayo Clinic Rochester Rheumatology medically gas lit me. I was positive ANA 5+, MCTD 1.2 positive. They told me nothing was wrong and "No further testing" was what was documented. I have suffered in Mayo Clinic's care for decades. I then went to the next establishment and was diagnosed with MCTD. On the 3rd medical opinion, that rheumatologist just hung his head and said, "what is wrong with Mayo?" All I can say is, "a lot!"
I have been diagnosed with mixed connective tissue disease and fibromyalgia. I am going blind from intracranial hypertension, conjuctival removal & early onset cataracts, goiters, have severe spine degeneration with stenosis with episodes of cauda equina. I’m afraid the doctors have once again misdiagnosed me. I did test positive for HLA-B27 & have slightly elevated IGG. Do you think this is a stable diagnosis or should I pursue a secondary opinion?
Hi Rebecca, I haven't evaluated you so I cannot specifically tell you what to do, but in general I recommend patients keep pursuing alternative solutions and second opinions if they do not feel confident in their treatment plan or diagnoses. I'm truly wishing you the best, my heart goes out to your complex situation, and I hope that you find some answers!
Gates Way to Health truly a beautiful reply. My condition is complex and I will ultimately do what I feel is right for me since I know my body better than anyone else. I definitely won’t be taking tons of medications and will be seeking least invasive & alternative options. Thank you for your time, compassionate reply, & the work you do. It is greatly appreciated.
I was diagnosed with MCTD in 2019 at age 41...which seems odd since I've been told it doesn't present in midlife. I take 6mg of low dose naltrexone which helps VERY LITTLE, however I don't have any other option at this time due to being unemployed (bc of debilitating pain) and awaiting disability. Are there any support groups for this disease?
I have been diagnosed with rheumatoid arthritis for 6 years. My SLE has been high for the last 2 years. I have Raynaud's disease as well. I have lost extreme amount of weight that we still can't figure out what it is. What do you think we should do next?
A consultation would help me to better understand all the details of the history and maybe I can give you some direction that may help from there. Our number is (833) 374-2837 or email us at info@gateswaytohealth.com to get that set up.
Have you tried low dose Naltrexone for your autoimmune diseases?I have five autoimmune diseases and am taking LDN- it has helped immensely with my symptoms but I've only been on it for a month.
I tested positive for RNP AB and the note says it’s consistent with mixed connective tissue disease. So does this mean I have this disease? With the proper care can I live a very long life with this disease? I have asthma so can this disease make my asthma worse? How can I not necessarily protect my lungs but avoid damage ? I’m only 20 yrs old
@@butterfly3938 Because I tested positive for RNP AB my symptom weren’t matching up with mixed connective tissue disorder. I was really inflamed internally as well. I told my doctor my symptoms of random hair loss, pain in some areas and inflammation in my hands. And they all pointed towards lupus. I hope this helps.
@@destinytorres5627 I feel pain in my legs and have raynauds, but my RNP wasn't high, it was indeterminate, I'm so confused, I will do more exams but I'm afraid
@@butterfly3938 don’t be afraid. You will be ok. Have you visited rheumatologist yet? They can declare if it is lupus or connective tissue disorder or something else. I’m always here if you need to talk to someone.
Gates Way to Health all I know is it was positive in the normal lab but my ana was negative when they send my blood to the specialty lab . I have raynaud’s I don’t believe it’s false positive for some reason . I was diagnosed with fibro
@@mandygarcia8146 In my experience ANA abs can go up and down. Though I cannot speak specific to your case as I have not evaluated you, RNP antibodies with Raynaud's generally is not typically something seen with fibromyalgia and as I discussed in the video is more consistent with something like undifferentiated vs mixed connective tissue disease.
Gates Way to Health that’s what I believe but the rheumatologist said my rnp is false positive I don’t believe it . My whole body is in pain , I have raynaud’s I have thyroid hypothyroidism I’m on meds for stomach I have ostio arthritis , and I have lost gullbkadder ,apendix, uterus had a spontaneous Achilles’ tendon . I’m diagnosed fibro and ostio I’m also tachycardia . I just don’t believe my diagnosis and here they won’t let me see another rheumatologist , what do we do if we don’t believe our diagnosis . I believe with my heart and soal I have MCTD . My ena is positive for rnp but my ana is negative is this common I just can’t see how antibodies seen in the blood to be negative . I also had full pelvic prolapse at 20 which is not common . I believe I have connective tissue disease and I can’t prove it it’s frustrating . I got steroids once for my lungs and all my pain went away but rheumatologist told me everyone feels good on steroids . My x ray showed ostio only arthritis is it possible that this is being missed ? My joints are visibly swollen but it’s blamed on my weight however my weight went up because I’m not mobile no more I’m only 40 been bed ridden 5 years now . The anxiety around this diagnosis is so hard because the only proof I have is a false positive rnp and a gut feeling
@@mandygarcia8146 My heart goes out to you. I would recommend to keep seeing other specialists and if at all possible another rheumatologist if your insurance will allow it. 833.374.2837 or info@gateswaytohealth if you want us to look at your case. Wishing you all the best,
How can I speak with you in real time? Is that possible? The doctors in my area are extremely uneducated with this Condition. I need to speak with a doctor that is knowledgeable like you....
I’m so frustrated. I had a positive Ana and rnp antibodies and I was so happy to finally know what was wrong with me. Then I went to my rheumatologist and he wouldn’t listen to me and wanted to just go to fibromyalgia. I don’t agree with it at all. I have symptoms from multiple diseases and I’m getting worse and it doesn’t line up with fibromyalgia. He said my rnp wasn’t high enough.
Update: got a different doctor who thought I had mixed connective tissue even though rnp is the only positive all inflammatory markers come back normal. He wanted to wait and see how things went before giving me any serious medication. When I came in one day and showed him the rash on my scalp and told him how bad my joint pain was he finally prescribed me Plaquenil and methotrexate. He said the rash on my scalp causing severe sensitivity looked like discoid lupus rash! It was hiding!
I tried differing diets...LowFod, gluten-free, dairy-free, Keto, Herbalife, juicing, liquids only and fasting...I have found they make no difference. I take woman’s daily vitamin, vitamin C, vitamin D, prescription strength Potassium, magnesium, an elderberry gummy, baby aspirin, high blood pressure med, and Metformin/15mg insulin, and a probiotic gummy. My biggest problem is with absorption.
Dr. Brent Goodman (Head Neurologist at Mayo) NAILS it within one of his last presentations when he says Sjogrens should be treated as a Neuro disease vs Rheumatological concentration. lab tests are insensitive to specific diagnosis. MANY Sjogrens pts DO NOT have dry eye/dry mouth but systemic pain, chronic fatigue and Neuropathy as initial presentation. A positive Lip Biopsy is currently the only diagnostic tool used for confirmation. Also;ANA may be positive at first then negative later. DIET has been the ONLY thing that has kept me from chemo meds. Casein, Lutein sensitivities and pro/pre biotics essential. ~Hashimotos, Sjogrens and Lupus patient x15 years
Dx with SLE and many other autoimmune diseases (including Raynaud's, Hoshimoto's, etc) 21 years ago. I have Hx of 2 DVT's and a PE, turns out that I am Factor 5 Leiden +, as well as Factor 8 +. Now at 41, bloodwork is showing that I do not have SLE. Heading to the University of Florida's Shands Hospital clinic in Gainesville to see a Rheumatologist/Immunologist to hopefully get Dx correctly. My ANA is positive but showing a complicated pattern. So fingers crossed 🤞 that it's something that is treatable. I just don't like how steroids are the only option. Steroids are a fix for everything but not a cure for anything.
Hello.. I was diagnosed in 2016 with Fibromyalgia.. Diagnosed with Lupus in December 2018. Diagnosed with Connective tissue in Aug 2019. Is there a chance the diagnosis of Fibromyalgia was actual Lupus?
Hi Jennifer, though I have not evaluated you so I cannot say for sure, my answer in general would be yes. However, the issue is pretty interesting in that a lot of Fibromyalgia patients are misdiagnosed as having Fibro as they will ultimately develop undifferentiated connective tissue disease, mixed connective tissue disease or Lupus. With that being said Lupus patients and Rheumatoid Arthritis patients can also have Fibromyalgia. I hope this helps, let me know if you want me to talk about this more. All the best,
@@gatesbrainhealth2639 yes, please talk more about it. I recently had pain and swelling in my ankles. A pain when my heel hits the ground with each step. They told me it was Fibromyalgia. I think they are wrong. My body holds heat, a constant temp. Nights sweats, insomnia, body aches and pain. They keep giving meds. I'd rather Know exactly what it is and then take meds vs. them guessing and giving meds
This is the best video I've seen on MCTD. I've changed almost everything in my life and I absolutely believe that gut health is a direct culprit of MCTD.
I wish my rheumatologist was this thorough when she diagnosed me with mixed connective tissue disease. She mentioned that I may have early onset lupus and when I asked if I could be tested she told me I didn’t show enough symptoms to be tested. Why would a patient be denied that testing if there is the slightest speculation?
Yours sounds like mine. Although I don’t think it’s lupus. I don’t really have all the skin issues. I have more inflammation in my hands ans feet the pads hurt to touch anything! Wether soft, hard, heavy light. Can’t bend them the get done swollen! Or stand due to the swelling on the bottoms of my feet
@@terriejonesarellano9523did you get a proper diagnosis?
In 2018 I found out I had an aortic aneurysm. They did an aortic root repair. After months of heart issues my doctor decided to test for autoimmune. I was diagnosed with MCTD in 2019. I have joint pain, fatigue and general feeling of unwell. I have cardiovascular issues like aneurysms, pericarditis and pericardial effusions. Most recently I'm having cognitive issues. Starting to lose my memory and having confusion. We're running tests now (MRI/CT scans) and seeing if my MCTD is causing vascular dementia. It's been an emotional roller-coaster these past couple years and hopefully I can find a way to work through this.
I was diagnosed with SLE 4 years ago. I was diagnosed with MCTD yesterday. My blood work is all over the place and I'm terrified. I'm 34.
My heart goes out to you
@@gatesbrainhealth2639 thank you. Just one day at a time. I actually got my dads DNA before he passed last year and have my moms as well so I plan on contacting some of the foundations and sending the raw dna in. Maybe itll help in the future.
@@angelwings6186 that's really thoughtful and yes hopefully some good information will come from that. Wishing you the best.
@@angelwings6186 I am the same. My dad passed when he was 59. He never knew he had MCTD. I just recently found out this is what I have.
Elvis Presley had this disease they knew nothing about it back in the 1970’s he died at 42!!!! Hang in there I believe this will be the decade of cures All The Best
I have Fibromyalgia but all tests are negative except I have a positive RNP antibody test, in follow-up too. Is this something I will die from? I am afraid.
Side note: ANA was negative as well.
With everything he said, the one thing he forgot to mention is that your blood work will have to be so bad there’s no turning back before you will get anything to help you. It seems to me these people that have positive ANA and positive RNP antibodies could be treated with a small amount of medicine instead of waiting until they’re too sick to care anymore. The United States healthcare system is disgusting and broken.
So true. I have the end of this disease. I'm a perfect example. Every diagnosis was backwards
Same I had symptoms for ten years before I got a diagnosis. The first one I got was lupus and mctd. Would have been nice if we could have slowed it down earlier.
I was diagnosed with MCTD in 2013. I believe suppressing the immune system is not the right way to treat it. It started with respiratory infection that wouldn’t go away. I started using turmeric as an anti-inflammatory and oregano oil for the infection. A few years later, I went back to see my doctor and did Sm/RNP (U1 RNP) test, came out negative.
Were you taking the tumeric and oil of or oregano for that long? If so how long and what's you dosage?
I use tumeric powder. I buy it as a big bag of organic spice. Cheap. Obviously it is not potent than taking oil, tincture, certified product or real root, but it is better than nothing and easy access.
Hi joy, I want to contact with you,can you provide your email id,or any other
I have ITP and APS, which have opposite symptoms and make it difficult to control the blood changes. I also had in April a subdural hematoma and a small sub arachnoid but they could control the bleeding in my brain at the end. After some months I had a new blood clot in the left side of my head and my platelets are going up and down but also antiphospholipid antibodies triple positive. I also have had Raynaud since I remember. This Monday the rheumatology told me that I have Mixed connective tissue Disease and they are thinking of giving me a treatment with Rituximab, hoping it control my blood and prevent another bleeding in my brain. I'm so confused and scared. I'm 25 years old!
Oh my goodness and my heart goes out to you! Wishing you the best!
I have been diagnosed with these::SLE, sjogrens, temporal arteritis(GCA), secondary Raynaud's, Grave's disease, mixed collagen vascular disease, anti-ccp positive rheumatoid arthritis. My Rheumatologist finally said to me that I do have MCTD. Exhausting and frightening 😢😢
😣🙏
I have been trying to get a diagnosis for my positive ANA and problems that have been growing and evolving for the last eight years and now I have seizures and other progressive issues now they say my liver is having problems and I still have yet to have any rheumatologist actually diagnosed me with anything specific or agree to anything or treat me.
I hope you get some answers soon. I was sent to a lot of specialists when I first got sick three years ago. I have some lupus and mctd autoantibodies. Diagnosed with lupus in US and then MCTD when I moved to the UK earlier this year. Pain every day no matter what, GI issues, and swollen lymph nodes throughout the body. Ugh.
So where do we get the diet you're talking about
I was diagnosed with MCTD polymyositis and ILD or pulmonary fibrosis. I also have hypothyroidism and raynauds
Your are in our thoughts and let us know if you have any questions.
Omg. Please elaborate on MCTD with APS!!!!! I’ve been tested to have nothing else, just these two. I’ve been trying for over 5 years to get info on this combination, and need a treatment plan! Help me!
I have APS too. Rheumatologists in US and UK have both told me that daily low dose aspirin is the treatment until you have a blood clot then you are put on blood thinners. I am not a doctor but that is what I was personally told was the "protocol" in two different countries. You may be told something else. Best of luck to you!
I have Sjogrens, Hashimoto's, MCTD, Fibromyalgia, Trigeminal Neuralgia, Narcolepsy, Overactive Bladder with Spasms, Excema, IBS, Tietze's, COPD, ADD, Osteopenia & Migraines. I'm a DES Daughter & had Rubella in-utero. Is that why my immune system is trying to kill me? I'm in chronic high levels of pain 24 hours a day. My Rheumatologist sent me to a pain specialist who wants to do a cervical injection for pain management. Isn't that a temporary fix though?
What are foods good to eat. So many ways out there and is collagen good? What amounts of D and magnesium should be taken?
Does your clinic diagnose autoimmune disease ?
My wife will be 42 in 2 weeks and at around the age of 29 she was diagnosed with undifferentiated connective tissue disorder.. then by 30 or 31 she was given MCTD and was placed on several different meds to figure out what worked best for her. Raynauds used to be bad.. and by the way this was all when we live in Houston, TX (where we are from). 2014 we moved to the mountains of Colorado and for the most part she has been doing really well up here with the occasional flare up. HOWEVER.. we just discovered that she is pregnant😁. She is extremely high risk due to her age and with the MCTD. We are trying to have an understanding of what this may mean for her now that she is pregnant. We had our 1st child when she was 23 by the way.
Wishing you both the best with the pregnancy!
My mixed connective tissue caused me to have a lung disease. I have lupus, raynaud's and sojourn syndrome
Diagnosed at 19 years old / scleroderma / suspected when I was 8-9
I have MCTD with only positive Ana and Rnp, AND FIBRO, esophagus doesn’t work, I have to swallow water to get food down, always have it seems swollen glands and mouth sores, neuropathy . I started have facial monolcous during sleep for months Now, and then started twitching all over my body in October, daytime and also muscle cramps all over body , It seems after ten years on Prednisone that it might have side effects of muscle cramps and all over twitching for me as I stopped the prednisone snd my daytime switching reduced 75 percent, I can take only 2 mg aday at the most .Would different cortisone have same bad effect? I had hepatitis C in the late 70,s and doctors didn’t have a name for it back then, I nearly died from hep C but was young and my body rid itself of the Hep C five years after I had developed it .I have had fatty liver now for two decades.
You might have Sjögren syndrome
Where is your practice located?
In 2015 I had a positive ANA test and I was positive for RNP… I ended up getting pregnant and couldn’t see the rheumatologist until about a year later because that was how long the wait was. At that visit the rheumatologist redid test and the ana was negative. I was diagnosed with fibromyalgia. Stopped seeing him because he said there was nothing he could do. The RNP wasn’t retested. Now I’m still having RNP positive but ana is negative.. I’ve had 2 RNP positive test this year and I now have Raynuads. And potentially POTS. My rheumatologist said the RNP is false positive.. but I have a hard time believing 3 test could be false positive! I’m glad you said to question it. I’m definitely questioning the diagnosis.. or it’s fibromyalgia and something else as well.
I was diagnosed with sjogrens fibromyalgia and neuropathy 20 yrs ago now been diagnosed with eds mixed connected tissue disease got inflation of bowel bladder and bowel inconvenience for enlarged red blood cells breathing problems so ill fatigued severe back n hip pain I never get temperatures but when I eat I over heat bad
I had negative ANA and 1:80 positive RNP these results seem odd- any thoughts. I lack clinical symptoms but these tests were ordered because I had a slightly elevated CRP (first time was 19 second 12.5)
We can discuss in a consult if you want, because of HIPPA I can't comment on specific cases with a public forum like this. Wishing you the best.
@@gatesbrainhealth2639 Can I have an online consult. I can send you my labs that I do have. My original doctor said that I do have some type of autoimmune disorder but she does not know what. I changed doctors because she seemed so nonchalant in what I was trying to tell her and I did not get these abnormal lab results until a month and a half later. So I just saw a new doctor and he did run a couple of labs and he said that I do not have Lupus but I have Osteoarthritis. So how do you explain these abnormal labs???? Lupus runs in my family and even if it is not Lupus I know that something else is going on!!
@@evanewton1974 I look forward to reviewing this. Please contact our front desk at info@gatesbrainhealth.com or 775.507.2000
@@gatesbrainhealth2639 thank you so much!!!!
I was diagnosed what MCTD in 2021 and I did a low histamine diet and found my main food triggers. I have never done any pharmaceuticals or steroids for the condition.
I eat gluten-free, have to stay away from tomatoes and tomato products and keep them at a bare minimum, And also cannot drink alcohol very often if it all, And cannot eat leftovers unless it’s within 24 hours of it being cooked.
I do get Reynauds in the winter time.
When my hands get cold and my feet. I live in Ohio, so the winters are hard on me here.
I know when I have a flareup, what caused it .
Stresses a big trigger
Lack of exercise is a trigger
And also not getting enough rest or body repair time.
I take vitamin C, vitamin D B12 quercetin every day
And I take Aleve when the inflammation is unbearable .
I do self massage …
Also use castor oil religiously, as well as magnesium spray at night.
I’m not completely pain-free or symptom-free, but it is 75% better than it was when it started.
When I first found out when I was chasing symptoms, I was having major gut related issues, and my mouth was breaking out in a rash constantly. My body hurts so badly and when working out. I would be so sore that I could not do anything without severe pain. I felt like I been beaten or the feeling you would have after a car accident or impact accident.
This all came on me after the Covid shut down .
I did not get the vaccination and I will not
But I did have Covid and my symptoms were severely increased after having COVID-19.
I believe I believe Covid has a huge role to play in the increase of auto immune diseases in the past four years.
Almost everyone I know has one
Has symptoms of one
I have been diagnosed with MCTD over 13 years ago and I don't have any signs of lupus.
may i know the symptoms that you had? cause i recently got diagnosed with mctd but my symptoms is just joint pain, stiff neck, tension headache, and light sensitivity
I have Undefined MCTD with Antiphospholipid Syndrome, no other syndromes. It’s so rare there’s zero information on it. I’m allergic to sulfa, therefore allergic to hydroxychloroquine sulfate. My liver enzymes are three times normal, therefore cannot take methotrexate or handle pain killers.
My symptoms are different than other people. I have red spots all over my feet and go up my leg, on my hands creeping up my arms. I also have red spots on my face. I had biopsy, it’s not vasculitis. No one can tell me what they are. Also, my feet, legs, hands and arms are skeletal. Loss of muscle and some neuropathy. I get muscle aches, not joints. Large and small, my muscles wear out during the day, depending on my activity level can render me immobile by the end of the day, and hurt so bad it’s hard to sleep. I must control my physical activity, limit to short durations, about 20 minutes, usually house cleaning, then rest for an hour then go again until about 3-4 pm in which I require a nap or quiet time, no movement, playing on my iPad, to have enough energy to cook dinner. My lower back gives out first, unable to hold my own body weight. Any stress or extreme physical actions will cause me to get a head ache, slight fever, and render me unable to do anything the next day. I used to have esophageal problems swallowing food, spit up, and wretching. But now take large doses of Potassium and magnesium to counter. I had to have my esophagus ballooned because it was cork screwed from damage, and still have visible heavy scarring seen on a CAT scan. I prime my esophagus before I eat, by drinking water first. My disease attacked my female organs, had them removed, then appendix, then pancreas. My kidney function in borderline, but no issues, I have a inoperable nodule on one of my adrenal grands. In theory, there are nodules around my lungs and other organs, but no issues. Speaking of adrenaline, if I get stress or excited, do heavy exersize, I get physically sick and spit up. To counter, I was prescribed Amitriptyline 50 mg to keep the stress down, my blood attacks the adrenaline in my muscles. I also get allergic reaction sometimes to eating food, I carry a rescue inhaler, Benadryl, and nose spray with me at all times. I was tested and have no allergies, it’s my body reacting to digesting food. It’s random, one day a reaction to nuts, another day, shellfish, or glutens. I get random uncontrollable diarrhea from something I ate but yes, random. Sometimes it’s caused by stress. My biggest complaint is the muscular pain I experience, and my inability to work or walk thru a store without getting fatigue afterwards. I was a truck driver, class A, tanker/hazmat. After going over the road, I got a job working flatbed hauling equipment, hauling fuel, and driving water tanker in the Natural Gas industry. I trained with Haliburton and was top of the class. As a woman, I could name my price. But fatigue slowly came on, I would spit up in secret, wore an adult diaper, but finally had to have surgery in which i never really recovered. I tried juicing, vitamins, everything I could think of...but I could no longer shift a truck or do the job. This was five years ago. After five (5) Rhumies, over 100 blood tests, and finally being tested by experts at John Hopkins, I got a diagnosis. But no treatment plan, they all dumped me...my case too difficult which may carry liabilities even tho I have good insurance. I go to a regular family doctor a couple times a year to get vitamin level check, organ function, and sugar measured. I’ve gotten my diabetes to a 6.1, and understand it’s this condition I have that is effecting it, not diet. It would be nice to try TPE (therapeutic plasma exchange) I read a medical paper about it being used experimentally for other immune disorders. But then learned what experimental vs common practice means, liabilities, and hospital administrators unwilling to allow for ‘Right To Try’. Cowards.
So...I’m dying, slowly, and painfully. I will eventually have a stroke, and early on-set dementia. Any advice would be welcomed. Thank you.
Could it be dermatomyositis?
I looked it up. No. The spots I have are like little round spots, not a rash. They started on my feet and now go up my legs, they are on my hands, going up my arms, and a few on my face. My extremities. They come and go, and they burn. Doctors tried me on hydroxychloroquine, but my spots got worse and burned really bad. I had an allergic reaction to the sulfa in hydroxychloroquine. I wonder if there is an antiviral that is sulfa-free? I had to off of it after three weeks. I had a reaction to steroids, too. I’m taking a baby aspirin daily to help with the APS, but my muscles are rapidly deteriorating. I also get ‘bee sting’ type sensations in my feet and on my head. Much neuropathy and muscle spasms. But thank you, I welcome any ideas!
Any chance that you could get to see the doctor on this video? You need very specialized care. You must find somebody to help you. And maybe your diagnosis is not correct either.
Also, get a supportive mental help, because that is a hell of a mill to go through alone!!! I lean heavily on my counsillor at the same time when I look help for my body! Because it is hard to navigate the medical system alone and often when I was dismissed by an one doctor, with my counsillor's support I had strentght to continue looking for answers elsewhere. And not every counsillor works well- There needs to be personality match.
Hi. Well, I had two heart attacks, and thankfully made it to the hospital in time, had a stint put in and put on blood thinners. My second heart attack was just a spasm, no heart damage, just bruised. My doctors don’t know how to treat my condition, other than manage my symptoms. I suffer with muscle pain daily. My muscles are not re-building, my hands, arms, feet and legs are very thin. I’m having issues again with swallowing, suffering with hiccups and sometimes spit up whatever is in my esophagus at that time. I may need my esophagus ballooned again. I am here by the Grace of God. Unvaxed, because I think it would do more harm than good. I haven’t had a cold or flu in about six years from taking all the vitamins and zinc. I struggle with having energy to do stuff like housework, so I do a bit at a time and have adopted a minimalist philosophy. I don’t trust doctors anymore, I had a cardiologist try to persuade me into taking the Frankenstein shot, even knowing it would probably kill me. Do not harm, my ass. I can give advice, tho...when dealing with MCTD and the ability to swallow food, ask to get esophagus ballooned, it helped me so much. Also take daily vitamins and have a doctor benchmark you so that your numbers are perfect. You can tweak what you eat, try LowFOD. Thank you for reading my story, I’m a bit long winded on this topic. There are so few of us with MCTD that there is very little information about treatment in medical paperwork for doctors to prescribe a treatment plan for. That’s sad.
Red pinpoint dots are called
petechiae. They form when capillaries bleed, leaking blood into the skin, and are indicative of the platelet disorder Thrombocytopenia.
I’ve tested positive for anti smith and RnP (or R something) antibodies. I’ve seen 2 rheumatologists and they never give me any answers. I was told symptoms might be my ADHD meds, the antibodies might be my vitiligo and fatigue is due to narcolepsy (which is absolutely not what’s going on). I’ve had no help and I’m completely lost as to what I should do. It seems that all the doctors EXCEPT the rheumatologist have raised concerns about me having an auto immune disease such as MCD and lupus. I just don’t know what I should do to help the rheum figure out what’s going on.
Yeah, it is hard to say. I think with persistence on your part they hopefully will get the diagnosis.
Anti-Smith is very specific to lupus according to my rheumatologist in the US. I have that, but because I also have anti U1-RNP antibodies the UK rheumatologist says I have MCTD . I just wish that all of the meds they have tried would help the pain. My husband is looking at buying a wheelchair because walking is so difficult now and I have only been sick 3 years, so for me that is devastating. Best of luck to you on your health journey. 🤞
@@elisahayes631 Thank you so much! I am so sorry to hear you are having such bad symptoms! I also had RNP and I recently saw a third rheumatologist who believes I may be in the early stages of Lupus , MCTD or both. She ran a blood test called AVISE and I'm currently waiting on the follow up appointment so I can find out and discuss the results. I hope you can get the help you need as well find a good medication to help reduce the pain you are experiencing!
What are your thoughts on the Avise test?
Great question. It's an interesting test.
I wish I could see you. I have hoshimotos but was diagnosed with a connective tissue disorder but I have massive dry mouth and dry eyes among other things. Plaquinel is a joke for me. Prednisone has made me heavy. Now that I’ve weined buff the prednisone the swelling in my hands ans feet are back a year on Plaquinel and I am not sure it’s for me
Oh my heart goes out to you and your case sounds very interesting. Wishing you the best!
Hydroxychloroquine works pretty well for me.
I have undifferentiated, fibromyalgia and scleritis bad. I'm curious is scleritis will throw me into the mixed version. I have dry eyes and mouth but no dr has further diagnosed of Sjorojans. Shouldn't that be a dx because I have scleritis severity? I'm on infusions of Rituxan and on Imuran . It's very hard to get multiple diagnosis which could help treat myself best. I've had this for 10 years now and it's accelerated more in the last 2 years. Thank you for your time.
I'm currently being evaluated for mctd. Do you ever encounter a severe sensitivity to many foods when there are no allergies present.
Yes.
Yes!
I’ve just tested positive for anti RNP and also positive for Lyme WB p93, p58. & p41. No treatment yet, waiting on doctor .. ugh What test should I be directed to now?
I was just diagnosed,I'm so scared.
Aaron, I was diagnosed yesterday and I’m scared about it myself. I’ve been researching and trying to find out as much about this as possible.
Eat clean and listen to your body. Walking helps. Fever and body pain is telling you to take it easy. Keep yourself warm. Your life is different but don't be scared. Be strong and don't let it get you down. I was where you are and I understand the fear. I'm taking plaquenil, baclofen, and prednisone. I've cleaned up my diet with eating fresh, no preservatives and additives. There needs to be more research for us. The diagnosis takes too long and there are too many people suffering.
Im praying for you. Specialist said mine was a mis diagnosis. You are in my prayers.
59M, Hashi's (treated), with RNP antibodies around 10. Severe fatigue is the#1 issue. Muscles fail to work #2 issue, fingers/skin turns red/thick white skin, Pred 10mg is a huge help, clean diet, Anything else help?
I have signs of and symptoms of autoimmune I have for many years I was told it was fibromyalgia for years till I was around 39 then a Dr said I think it’s Ms so now I’m being told that it’s more then likely connective tissue disorder smh and my sed test was high but my ANA was negative I’m in pain and can’t hardly walk at time I really need some help :(
How are you now? Ibuprophen can lower sed rate and probably other results.
Can you possibly help me overcome this disease? I just had a positive blood test and alot of the symptoms. Please let me know. Thanks...
Please give our office a call at (775) 507-2000 so that we can discuss your case in better detail.
That was *very interesting* to hear about the prednisone! I have many symptoms and waiting for my first appointment to rheumatologist, but when I ended up to emergency room and got steroids, they worked like MAGIC!
So that is very positive to know that I respond so well for them. Unfortunately doctors do not prescribe it to anybody who is not properly diagnosed in here.
But this did give much hope that if I have this diagnosis, I will make a full recovery 😊 I am very lucky if this comes true!
Please help me save $1800 for a second opinion (almost impossible to see another rheumatologist in NY when you're currently under the care of one). Rheumatologist told me that because I am positive for RNP (600 u/mL; standard range 0-99 u/mL) that alone means I have MCTD. I have sx of both SLE and SSc (CREST, APS, myositis , photosensitivity). I also have positive and extremely elevated anti-dsdna, anti-ssa, and anti-smith ab. Also increase histones. I'm starting to think I'm misdiagnosed and that I actually have Lupus and SSc independently, not an overlap which is probably why I'm not responding to current tx for the last 2 years. In your opinion, could it still be MCTD with these other positive antibodies?
Thanks for an insightful video on MCTD.
MY wife was diagnosed with MCTD in Jan 2019. She has been on
1) tab nifedipine 10 mg OD
2) Tab telmisartan 40mg OD
3) TAB Predniaolone 2.5 mg OD
4) Tab Methotrexate 10 mg weekly
5) andHCQ 200mg HS
apart from folic acid calcium
Is the treatment okay
Is RNP the same as Mixed Connected Disease?
Not necessarily, but most MCTD patients have RNP antibodies in addition to the symptoms and features of the condition.
Mayo Clinic Rochester Rheumatology medically gas lit me. I was positive ANA 5+, MCTD 1.2 positive. They told me nothing was wrong and "No further testing" was what was documented. I have suffered in Mayo Clinic's care for decades. I then went to the next establishment and was diagnosed with MCTD. On the 3rd medical opinion, that rheumatologist just hung his head and said, "what is wrong with Mayo?" All I can say is, "a lot!"
Dx with MCTD 12.17.18
I have been diagnosed with mixed connective tissue disease and fibromyalgia. I am going blind from intracranial hypertension, conjuctival removal & early onset cataracts, goiters, have severe spine degeneration with stenosis with episodes of cauda equina. I’m afraid the doctors have once again misdiagnosed me. I did test positive for HLA-B27 & have slightly elevated IGG. Do you think this is a stable diagnosis or should I pursue a secondary opinion?
Hi Rebecca, I haven't evaluated you so I cannot specifically tell you what to do, but in general I recommend patients keep pursuing alternative solutions and second opinions if they do not feel confident in their treatment plan or diagnoses. I'm truly wishing you the best, my heart goes out to your complex situation, and I hope that you find some answers!
Gates Way to Health truly a beautiful reply. My condition is complex and I will ultimately do what I feel is right for me since I know my body better than anyone else. I definitely won’t be taking tons of medications and will be seeking least invasive & alternative options. Thank you for your time, compassionate reply, & the work you do. It is greatly appreciated.
@@rebeccamd7903 Thank you, I really appreciate it!
I was diagnosed with MCTD in 2019 at age 41...which seems odd since I've been told it doesn't present in midlife. I take 6mg of low dose naltrexone which helps VERY LITTLE, however I don't have any other option at this time due to being unemployed (bc of debilitating pain) and awaiting disability. Are there any support groups for this disease?
I have been diagnosed with rheumatoid arthritis for 6 years. My SLE has been high for the last 2 years. I have Raynaud's disease as well. I have lost extreme amount of weight that we still can't figure out what it is. What do you think we should do next?
A consultation would help me to better understand all the details of the history and maybe I can give you some direction that may help from there. Our number is (833) 374-2837 or email us at info@gateswaytohealth.com to get that set up.
Have you tried low dose Naltrexone for your autoimmune diseases?I have five autoimmune diseases and am taking LDN- it has helped immensely with my symptoms but I've only been on it for a month.
I tested positive for RNP AB and the note says it’s consistent with mixed connective tissue disease. So does this mean I have this disease? With the proper care can I live a very long life with this disease? I have asthma so can this disease make my asthma worse? How can I not necessarily protect my lungs but avoid damage ? I’m only 20 yrs old
Now I know I have lupus. Just an update
@@destinytorres5627 How you know that you have lupus? I have RNP and ANA, raynaud phenomenon and nothing more
@@butterfly3938 Because I tested positive for RNP AB my symptom weren’t matching up with mixed connective tissue disorder. I was really inflamed internally as well. I told my doctor my symptoms of random hair loss, pain in some areas and inflammation in my hands. And they all pointed towards lupus. I hope this helps.
@@destinytorres5627 I feel pain in my legs and have raynauds, but my RNP wasn't high, it was indeterminate, I'm so confused, I will do more exams but I'm afraid
@@butterfly3938 don’t be afraid. You will be ok. Have you visited rheumatologist yet? They can declare if it is lupus or connective tissue disorder or something else. I’m always here if you need to talk to someone.
I have a false positive is that common my rnp was false positive
Hi, I would look into how the testing was run i.e. ELISA vs Immunobloting.
Gates Way to Health all I know is it was positive in the normal lab but my ana was negative when they send my blood to the specialty lab . I have raynaud’s I don’t believe it’s false positive for some reason . I was diagnosed with fibro
@@mandygarcia8146 In my experience ANA abs can go up and down. Though I cannot speak specific to your case as I have not evaluated you, RNP antibodies with Raynaud's generally is not typically something seen with fibromyalgia and as I discussed in the video is more consistent with something like undifferentiated vs mixed connective tissue disease.
Gates Way to Health that’s what I believe but the rheumatologist said my rnp is false positive I don’t believe it . My whole body is in pain , I have raynaud’s I have thyroid hypothyroidism I’m on meds for stomach I have ostio arthritis , and I have lost gullbkadder ,apendix, uterus had a spontaneous Achilles’ tendon . I’m diagnosed fibro and ostio I’m also tachycardia . I just don’t believe my diagnosis and here they won’t let me see another rheumatologist , what do we do if we don’t believe our diagnosis . I believe with my heart and soal I have MCTD . My ena is positive for rnp but my ana is negative is this common I just can’t see how antibodies seen in the blood to be negative . I also had full pelvic prolapse at 20 which is not common . I believe I have connective tissue disease and I can’t prove it it’s frustrating . I got steroids once for my lungs and all my pain went away but rheumatologist told me everyone feels good on steroids . My x ray showed ostio only arthritis is it possible that this is being missed ? My joints are visibly swollen but it’s blamed on my weight however my weight went up because I’m not mobile no more I’m only 40 been bed ridden 5 years now . The anxiety around this diagnosis is so hard because the only proof I have is a false positive rnp and a gut feeling
@@mandygarcia8146 My heart goes out to you. I would recommend to keep seeing other specialists and if at all possible another rheumatologist if your insurance will allow it. 833.374.2837 or info@gateswaytohealth if you want us to look at your case. Wishing you all the best,
Hi wear u located ur office
Reno Nevada
How can I speak with you in real time? Is that possible? The doctors in my area are extremely uneducated with this Condition. I need to speak with a doctor that is knowledgeable like you....
Hi Laura, please call our front desk at 775.507.2000 or email us at info@gatesbrainhealth.com. I look forward to speaking with you.
I’m so frustrated. I had a positive Ana and rnp antibodies and I was so happy to finally know what was wrong with me. Then I went to my rheumatologist and he wouldn’t listen to me and wanted to just go to fibromyalgia. I don’t agree with it at all. I have symptoms from multiple diseases and I’m getting worse and it doesn’t line up with fibromyalgia. He said my rnp wasn’t high enough.
Update: got a different doctor who thought I had mixed connective tissue even though rnp is the only positive all inflammatory markers come back normal. He wanted to wait and see how things went before giving me any serious medication. When I came in one day and showed him the rash on my scalp and told him how bad my joint pain was he finally prescribed me Plaquenil and methotrexate. He said the rash on my scalp causing severe sensitivity looked like discoid lupus rash! It was hiding!
He also said he will treat what he sees and feels and not what the tests say they aren’t always right
He also said he will treat what he sees and feels and not what the tests say they aren’t always right
He also said he will treat what he sees and feels and not what the tests say they aren’t always right
Thank you 🤩🤩💖
I tried differing diets...LowFod, gluten-free, dairy-free, Keto, Herbalife, juicing, liquids only and fasting...I have found they make no difference. I take woman’s daily vitamin, vitamin C, vitamin D, prescription strength Potassium, magnesium, an elderberry gummy, baby aspirin, high blood pressure med, and Metformin/15mg insulin, and a probiotic gummy. My biggest problem is with absorption.
I'll try to do a video on this soon!
Thank you. 🙏
It's possible that I'm mistaken but, I thought elderberry was on the no no list.
What about toxic, bio hazard environment from molded attic??
Dr. Brent Goodman (Head Neurologist at Mayo) NAILS it within one of his last presentations when he says Sjogrens should be treated as a Neuro disease vs Rheumatological concentration. lab tests are insensitive to specific diagnosis. MANY Sjogrens pts DO NOT have dry eye/dry mouth but systemic pain, chronic fatigue and Neuropathy as initial presentation. A positive Lip Biopsy is currently the only diagnostic tool used for confirmation. Also;ANA may be positive at first then negative later. DIET has been the ONLY thing that has kept me from chemo meds. Casein, Lutein sensitivities and pro/pre biotics essential. ~Hashimotos, Sjogrens and Lupus patient x15 years
Dx with SLE and many other autoimmune diseases (including Raynaud's, Hoshimoto's, etc) 21 years ago. I have Hx of 2 DVT's and a PE, turns out that I am Factor 5 Leiden +, as well as Factor 8 +. Now at 41, bloodwork is showing that I do not have SLE. Heading to the University of Florida's Shands Hospital clinic in Gainesville to see a Rheumatologist/Immunologist to hopefully get Dx correctly. My ANA is positive but showing a complicated pattern. So fingers crossed 🤞 that it's something that is treatable. I just don't like how steroids are the only option. Steroids are a fix for everything but not a cure for anything.
Hello.. I was diagnosed in 2016 with Fibromyalgia.. Diagnosed with Lupus in December 2018. Diagnosed with Connective tissue in Aug 2019. Is there a chance the diagnosis of Fibromyalgia was actual Lupus?
Hi Jennifer, though I have not evaluated you so I cannot say for sure, my answer in general would be yes. However, the issue is pretty interesting in that a lot of Fibromyalgia patients are misdiagnosed as having Fibro as they will ultimately develop undifferentiated connective tissue disease, mixed connective tissue disease or Lupus. With that being said Lupus patients and Rheumatoid Arthritis patients can also have Fibromyalgia.
I hope this helps, let me know if you want me to talk about this more. All the best,
Have you tried low dose Naltrexone for your autoimmune diseases? It has helped me immensely.
@@gatesbrainhealth2639 yes, please talk more about it. I recently had pain and swelling in my ankles. A pain when my heel hits the ground with each step. They told me it was Fibromyalgia. I think they are wrong. My body holds heat, a constant temp. Nights sweats, insomnia, body aches and pain. They keep giving meds. I'd rather Know exactly what it is and then take meds vs. them guessing and giving meds
@@Germatti13489 No, I haven't. Let me compare and research. What were some of your pains and symptoms