Help required. Advice within diagnosis stage.

[Lifeofpurple]

Hi, I was wondering if I please could have some advice I’m 19 and in a terrible process of being diagnosed. My endocrinologist diagnosed me with Chronic fatigue and Fibromyalgia however now the ANA has come back only weakly positive he’s more struck on lupus with all the symptoms and skin sensitivity. My ENA however came back negative but then underneath says ENA contains: Ro(SSA), La(SSB), Sm, RNP, Jo-1 and SCL-70. So I’m confused?

My GP and unfortunately the people for the lost part I’ve seen so far haven’t been very good at all and have said they jsut don’t know? It’s truly become a battle.

My Red blood cells also come back high along with my prolactin levels, white bloods cells fluctuate every time I get bloods done. I’m also very Vitamin D deficient along with B12 and folate. Also a low transferrin saturation index. A lot of things are borderline low or high also such INR, Nucleated RBC, NRBC abs, haemoglobin high, haematocrit and some others. I dont want to read too much into online but not getting anywhere and just making me worse and mentally not good. Any help with anything at all would be amazing.

Thank you so much!

[Lisalou19]

I know that Jo-1 is associated with polymyositis. What is the next step for you with your specialist? It’s quite a long tiring road to diagnosis, but looks like you are getting a thorough mot. X

[Lisalou19]

Mysiotis: jo-1.

I can’t edit my post! My friend has polymyositis so auto spelling automatically spelt polymyositis.

[Lifeofpurple in reply to Lisalou19]

Thank you for your advice. We just at a loss now the pain in my bones and the aching in my body is just horrendous. I feel like my lungs are stuck to my back I never feel have enough oxygen and feel deprived. I’m Vitamin D, B12, iron and folate deficient also. Every time my bloods are checked something new comes up and changes. My appetite is very low for me. I’m a foodie but couldn’t care less if I eat or not when foods mentioned, though makes me nauseous. My temperature gage is so off constantly with low grade fevers. Hands and feet freezing cold with little feeling. I jsut feel I need to snap my body in half for just a temporary relief. Rashes on my face, chest and back with scar but makes me look like I have bad acne when it’s rashes, I had such good skin But it’s itchy but like blisters and super sore. I have times when I get out baths/showers and I itch so bad it’s like millions of needles under my skin. Dermatology has said everything in terms of them are ok but was the worse dermatologist ever she blaintly said she had no clue and no reason as to why I develop pyoderma gangrenosum after an operation 3 years ago. No help at all. I have an appointment on the 15th for the best lupus doctor in my area so I’ve been told but just know nothings gonna get sorted. The symptoms are getting worse drastically and no one knows what to do with me nor the things I did before are helping anymore. The depression really has started to take affect. Since when did we have to fight for health. It annoys me that doctors jsut day well if your ins are normal your fine when screaming in pain. No!! Not everyone fits the moulds they are taught to treat. Whilst in hospital admitted having to fight for CT scans and pain relief! It’s a disgrace but then people say go private but not everyone can afford private. It’s just a mess

[Lisalou19 in reply to Lifeofpurple]

Has anyone offered you to do a lung function test? The lungs can be affected with myosotis and rashes occur.

Unfortunately these diseases are so complex for some medical professionals. When you see the private consultant mention your jo1 anti bodies.

I understand your frustration and of course whatever it is knocks you for 6, but you got to have faith and strength within to get the answers you need. It is such a shame the length we have to go through to get answers x

[cmparedes87]

I feel for you and totally understand. I will only speak from my own experience you will have to find your own path for sure but Im here to let you know few tips around the Lupus/ RA world. Here is what I know to be true so far during my journey through hell. #1 NO advancements have been made in over 40 years for Lupus. Why? No funding. All efforts in USA/ Western "medicine" goes to cancer. Fact Pharma is giving Cancer to USA citizens. Research the last 4 cardiac meds pulled off shelf in 2018 you will find the cancer causing agents in meds they prescribe. My sister and I both have Lupus. If you research that you will find the odds of it occurring, She was diagnosed age 15 USF Tampa mid 1980's. She has discoid and systemic (SLE). I have SLE double stranded. I have gained 5 more autoimmune disease since 2000. Be aware now so you can relax into the roller coaster a key element which is once one condition moves in it opens the door for many more conditions to follow. I can tell you after 18 years of this hell Western physicians have NO clue, NO cure, No real treatment. I was on 23 meds like Michael Jackson decided to stop listening to the docs after following every silly suggestion they made in the end I took back my power and stopped all the TOXIC PHARMA. The only 2 treatments when all is said and done they will offer you is Plaquenil which is for Malaria patients. Interferon used for Cancer patients. USA today is playing around with IG treatments Selena Gomez was only in her 3rd year of Lupus when she decided to do IG treatments. She ended up with an organ failing and had to have a transplant. Im good to go with that. Im no experimental bunny / lab rat. With all autoimmune conditions you are at higher risk for Sepsis, Cellulitis, random infections etc. I spent over 15 years obsessed with my labs. My goal was to keep balance but my labs were always all over the place. I have changed my diet numerous times in effort to create harmony from within. I get asked often what Lupus feels like tell folks there are no words really for it. You can feel the battle inside your cells. In my case my body feels like an orchestra warming up. Out of tune, loud, discord, yet ready to make tons of noise. I call it the attention seeker constant throbbing pain, relentless nausea, restlessness, insomnia, heartburn, headaches, body aches, fevers, chills, weight loss/ gain, hair loss. skin changes, moderate dental issues once Sjogrens moves in. Fibro is a bitch which will layer your hell. Some advice allow yourself to rest no matter what don't push yourself. Im a single mom, nurse and woman who takes care of her local community. I don't live "of my flesh". I eliminated any and all stress. My sister did the same which for her meant walking away from her family. She no longer speaks or sees us we are all on year 9 of this treatment from her. I just had to throw my own mother away after 35 years of standing by her side. My sister rid her from her life much faster than I did. My mother at one point had to legit hold my IV in place once for 4 hours since my veins are scarred both arms inside techs can no longer gain access from my hands or arms. Why you ask? When I was in my medical record online this week was reviewing a result. When app loaded I had above one icon was the amount of results on file to date are 528 thats just labs, CT's MRI's you name it that number is fucking ridiculous. That is just one of the 14 hospitals I have lived in on both coasts of Florida over the 18 years. My suggestions after decades of BS when they come at me now with a needle I say No thanks ! I let them in now very rarely. Why because NO matter what they discover they cant do a damn thing about it. Goggle it all via Lupus Foundation see the list of stars Seal, NIck Cannon, Toni Braxton, Lady Gaga (still in denial to degree about her shit show), Anna Nicole Smith, MJ they all suffer/ suffered. I was always in a state of panic in back of my mind knowing all along that Im in hell and there is no way out. LIve every single day you have to the fullest. I no longer follow a single thing western docs say they dont know shit and if you dig many docs on your team will eventually admit they have no clue. What pharma they do offer you is suppose to relive symptoms. Instead they give you more issues and conditions. Your body is in a constant battle it has no idea what to follow. I picture my cells lining up daily for war... red and white blood cells armed ready to fight so my advice is cave to the diagnosis. One way or another if your ANA is borderline or positive you have a form of autoimmune the umbrella is large many things sit under it like Parkinsons, Fibro, Lupus, RA, Diabetes, Hashimotos the list is endless and trust me when I say they are unwelcomed guests crashing your party. Once they arrive they never leave and there are NO cures for any of the above conditions. I am a nurse and have been viewing patients charts outside of my own for decades. I can only say the ones thriving are the ones NOT following western medicine. I am in South Korea at this very moment in my 18th year looking for more than USA can offer. Pharma is not the answer its just more chemicals. My body is confused enough on its own it doesnt need to be masked by a med or given toxins. Yes stay out of sun I say that as a Floridian since 1985. Wear UV protected clothing if you have an outing. East farm to table fresh is best at all times. Dont do drive thru, chickens, beef, GMO's, soda, booze, cigs, never eat from a package additives are waste of time and block your body from performing you will feel slugish and crappy all the time from diet alone. Cook for yourself eat 4 to 6 times a day child portions or palm of your hand. Rid your life of all triggers and stressors. Maintain healthy BMI. Refuse meds. Get a strong team if a doc doesnt look you in the eyes and pay attention with feedback and if they are done with you in 15 mins (classic time allowed per insurance) get rid of them. Harmony is goal can't have that if your team is not up to par. I have a team this year I hand selected 7 docs. Good luck wish you the best !

[Lifeofpurple]

Thank you for your advice. We just at a loss now the pain in my bones and the aching in my body is just horrendous. I feel like my lungs are stuck to my back I never feel have enough oxygen and feel deprived. I’m Vitamin D, B12, iron and folate deficient also. Every time my bloods are checked something new comes up and changes. My appetite is very low for me. I’m a foodie but couldn’t care less if I eat or not when foods mentioned, though makes me nauseous. My temperature gage is so off constantly with low grade fevers. Hands and feet freezing cold with little feeling. I jsut feel I need to snap my body in half for just a temporary relief. Rashes on my face, chest and back with scar but makes me look like I have bad acne when it’s rashes, I had such good skin But it’s itchy but like blisters and super sore. I have times when I get out baths/showers and I itch so bad it’s like millions of needles under my skin. Dermatology has said everything in terms of them are ok but was the worse dermatologist ever she blaintly said she had no clue and no reason as to why I develop pyoderma gangrenosum after an operation 3 years ago. No help at all. I have an appointment on the 15th for the best lupus doctor in my area so I’ve been told but just know nothings gonna get sorted. The symptoms are getting worse drastically and no one knows what to do with me nor the things I did before are helping anymore. The depression really has started to take affect. Since when did we have to fight for health. It annoys me that doctors jsut day well if your ins are normal your fine when screaming in pain. No!! Not everyone fits the moulds they are taught to treat. Whilst in hospital admitted having to fight for CT scans and pain relief! It’s a disgrace but then people say go private but not everyone can afford private. It’s just a mess.

[Chanpreet_Walia LUPUS UK]

Hi Lifeofpurple,

Welcome to the LUPUS UK HealthUnlocked community. We offer a free information pack which contains factsheets, guides, a list of helplines and a list of LUPUS UK Contacts who you can chat with over the telephone. Our Contacts mostly have lupus themselves, they are there to offer support and understanding. In some cases, people find this pack helpful to take with them to their doctor to help explain their symptoms. Also, some people order a pack for their doctor to help educate them about lupus. To request or download the pack visit lupusuk.org.uk/request-info...

An ANA test only confirms whether or not a person has an autoimmune disorder, it does not confirm if a person has lupus. dsDNA antibodies are very specific for lupus (as they are not typically seen in any other condition or in healthy population) only approximately 60% of people with SLE will test ‘positive’. Therefore if someone is positive for these antibodies, it often means they have lupus, but if they are negative it does not necessarily mean they do not have lupus. For more information, you can read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

If you are not satisfied with your doctor you are entitled to request a referral for a second opinion. To find out how you can do this, click here lupusuk.org.uk/getting-the-...

To read our blog article on coping with light sensitivity, visit lupusuk.org.uk/coping-with-...

Please keep us updated, wishing you all the best!