My Prognosis with Mixed Connective Tissue Disease and Polymyositis

[@babybaby5893]

I can’t stop googling about lupus. Or KZbin lupus. I have SLE, I love your comforting me, I need to watch this video twice or more, thank you 🙏

[@steveajmn]

Thank you for taking the edge off of my recent diagnosis. You are kind to educate the rest of us!

[@Fizzstah2]

It's the reason I started the channel ❤️ I'm glad these videos are still helping people ✨

[@chloehenningable]

I was diagnosed with MCTD a week ago. Thanks for the reassurance. I appreciate hearing good things and similar things from another human with this crazy disease!!!

[@sophiaf3132]

Yes this video was amazing. Just got diagnosed today need all the words of encouragement I can get..I always remember My God can do anything!!!! Love you guys!

[@Fizzstah2]

@sophiaf3132 I'm glad these videos can still help all these years later!

[@justinermiger6734]

Love you! Thanks for being so kind! I am on my journey of a diagnosis. You are so incredible inspiring! Thanks for support here! God bless you

[@Fizzstah2]

I hope you get the answers you're looking for!

[@upgrademebb7637]

so encouraging, I was diagnosed with mixed convective tissue disease... googling the prognosis can be scary, but you are an inspiration! I take tumeric with black pepper. it helps a lot!

[@Fizzstah2]

Bb Rockenton Thank you! I take turmeric too

[@rashidagafoor5794]

Bb Rockenton..how turmeric nd black pepper being used...pls reply😊

[@isabellamoyo569]

Thanks this is encouraging i take tumeric with black pepper

[@cherylcarlson3315]

This popped onto feed today. Coming on a year since diagnosed with Inclusion Body Myositis. Struggling to find MD who knows about this process and will help. Right now feel like if i don't tick all the right boxes in the right order, which of course I don't, he doesn't know what is going on and is refusing more tests, says there is no treatment other than exercise. Feel like I am on second day of flu everyday for the last 2.5 yrs,struggle to move legs to walk,face feels absolutely flat and heavy if I exert at all. Finally sleeping for the first time in 2.5 yrs with the Bipap and oxygen. Can't work as RN when can't walk, lift, stay mentally clear all shift or get out to do something 2 days in a row.I want to work, need the money but can barely keep myself going. Have you found the Myositis Association? great info and has support forum which sort of eases this intolerable mess. Just want to say to anyone going through all the diagnositics and getting nowhere but exhausted,you aren't alone and it may not get better but you will find a way to cope a bit and not feel so alone.

[@gracewright7938]

I read the internet and at first thought the same this, I have 10 years to live. My RA convinced me that was not the case. But, I do read to keep up and find facebook pages where I can learn from others about this disease and symptoms and pain relievers, basically what is going on MCTD speaking.

[@Fizzstah2]

The internet can be very scary but I am thankful for platflorms like. This where we can learn and speak to each other

[@kristyntoney1660]

Thank God I found your video. I’ve been in a depression hole. 😩

[@kuntalazad3602]

I have been diagnosed with mctd few days back and I'm really sacred what will happen to me next. Your video is giving me hope. Thank you

[@Fizzstah2]

Only just seen this. I hope you're coping alright ❤️

[@courtney5623]

Thank you for this video. I have it to and love the support!!

[@Fizzstah2]

No problem that's what it's all about here!

[@nitudekabezpara8678]

@@Fizzstah2 what medicines are healing for your polymyositis? How much improved till now. Can you climb up the stairs? Can you jump?

[@Fizzstah2]

@@nitudekabezpara8678 Right now in drug induced remission and only take 150mg of Azathioprine. I never got to the point where I couldn't walk or jump. It was certainly more difficult at times but I could still do it. Watch a few more videos and you'll find more info.

[@lavonnethomas702]

I thank for u take time to talk about I need to just as u say I be tired and weak sometimes I want do things and times don't to because I have that same problem.

[@tjgrafiks]

What do u take for your RA symptoms?

[@rachelflores4132]

Thank you! Much encouragement it's much appreciated! God bless you!

[@tjgrafiks]

I have all those symptoms but most levels were normal. Only positive for RA. Even my ANA was negative. My platelets had dropped by almost 100 and fibrinogen levels were extremely low. Don’t know if that was a result of me taking Advil for a few days prior to the tests. My throat issue comes and go and is mild so far. Some nights it feels like my lungs will stop working

[@leighsaldivar4439]

I have mixed connective tissue disease. The dr really doesn’t know what I have exactly. Very frustrating

[@Fizzstah2]

I tend to have that frustration a lot myself. Do plenty of research so you can advocate for yourself and worst case look for another doctor ❤️

[@jesusreigns7753]

Will this disease cause acne like bumps on the face??

[@shrideep134]

Thanks a lott for this video and support!!! My wife (age 25) recently got 2nd time swollen finger in this year 2017.and got her blood test done, unfortunately she got Ribonucleoprotein Ab (Positive) 3.4 and rest of all ENA- anti-smit, RA factor, sjogren's negative. She has been prescribed 2nd time prednisone for treatment as rest of all OTC meds and NSAIDS didn't work. Me and my wife are really scared as we have doctor appointment after 2 days on Monday. We found MCTD most probably from google and prognosis scared us a lot. please help us out if possible.

[@Fizzstah2]

+Shrideep Patel Sorry for the late reply. It's best to wait and see what she's diagnosed with first as there are lots of possibilities. Try not to worry too much. Once you have a diagnosis you can start working on a treatment plan.

[@shrideep134]

Just Fizzstah thanks a lot for reply..sorry I read message now..!!

[@notchamama7571]

I know you’re both terrified, but take a breath. Be gentle with each other and yourself during this process. Ive been sick for 13 years, and I still manage to live a full life. Check out spoons/spoon theory!💜

[@Sims4Pose]

Beautiful. Love your accent.

[@Fizzstah2]

Sims 4 Pose Thank you

[@kidablue]

Hi there, I have something too!!

[@GodisLovetoo]

Thank you for sharing! How high were your CPK levels?

[@Fizzstah2]

Goddess Love They were over 6000

[@laydeeTeaAurora]

When I was first diagnosed my ck level was 15,021. As well as positive Anti-jo 1.

[@purnimasingh1925]

@@laydeeTeaAurora Hey! Hope u r doing good. My brother has also been diagnosed with strong Anti- jo1 positive. Do u have some tips which we can follow apart from the medications?

[@leoncreese2545]

Did you change your diet?

[@inkstainedgirl]

Hi, I was wondering if youd share what medications you are taking for MCTD/polymiositis? I just got diagnosed last year and am still not feeling its managed well.

[@Fizzstah2]

inkstainedgirl Check out my newer videos I have quite a few on my medications. kzbin.info/www/bejne/f5XPoJd5h9iCkM0 & kzbin.info/www/bejne/hprTn4mkfNCGfKs

[@inkstainedgirl]

Thank you :)

[@Fizzstah2]

Leave me a comment! What prognosis were you given? Any new videos you would like to see?

[@lydiajohn7205]

Just Fizzstah I was diagnosed with polymiosis

[@laydeeTeaAurora]

I have had polymyositis for 9 years now. As well as Raynauds phenomenon, Sjogrens and Interstitial lung disease

[@fanieb6518]

Polymyoitis

[@bhuvanbam8499]

I have polymyositis. Started IVIG after failure with prednisolone, azathioprine, rituximab.