I make notes in my phone all the time so I can ask questions but I swear my Rheumatologist never lets me talk he only spends like ten mins tops with me it's super annoying and I usually leave there feeling like I'm stupid for asking him things

Timing is everything, this popped up on my feed, and I have my first appointment tomorrow morning. Thanks so much for sharing this info! 💕👍

Thank you, sweetheart!!! After many years of suffering and being diagnosed with individual components of this disorder, They are finally testing my blood for LUPUS. Havent gotten my results back yet but just having the diagnosis would relieve much stress( and stress triggers) and I could shift focus and begin a regime that follows recommended guidelines. Bless your heart for all your videos and your desire to help others. Wishing you many beautiful days ahead!!!

You are more helpful than all the doctors and hospitals I've been to in the last 3 years. I've gotten no help, they just say they don't know what's wrong with me and to give it more time maybe it will fix itself. They even took me off the painkillers I was on for a bad back and messed up leg because I got sicker and they couldn't put an exact diagnosis on it. My right wrist started hurting really bad one day then my right hand swoll up and I had to put a brace on it then my left wrist and hand started hurting really bad and I had to put a wrist brace on it. Then my left ankle started hurting really bad then my right ankle started hurting really bad and I couldn't walk anymore within two weeks of when my right wrist started hurting. my body also became very delicate and if I hurt anything the disease would immediately start attacking it. They tried to tell me I had carpal tunnel syndrome at two hospitals. My sister finally got me into the hospital that she works at and by then I was really screwed up I thought I was going to die. Wherever it hurt the most on my extremities my skin got really thick and turned really brown then pealed off. And the disease progressed up my joints attacking my knees my elbows eventually my shoulders it attacked my face and my neck and eyes and basically everywhere that tendons attach to my bones. The flexor muscles on my arms pretty much dissolved and went away my hands got like pretty much dissolved, all the fat and material in them went away. I had way too many symptoms to even describe but the people in the hospital said they had never seen anything like. They gave me Solu-Medrol and that seemed to help, the swelling in my hand went away but they didn't know what to do and sent me home after 9 days in a wheelchair with a month supply of prednisone. I spent the next year in bed unable to walk or to even cut my food up. I finally got sent to a rheumatologist and he ran a lot of tests on me and all he said was possibly I could have some type of autoimmune disease, but he didn't sound real sure. he never gave me any kind of advice or speculated on anything he would just act like he had no clue what was wrong with me and it's almost like he wanted me to keep coming back so he could get paid. I started getting a little better and I gave up on all the doctors. I got to where I could walk about 2 miles on a good day. But two months ago the disease came back hard again and I've been unable to walk since, my hands luckily haven't been attacked this time it's just my ankles and my eyes. So I started exploring KZfaq looking for autoimmune problems and ran across you and a few other people and it's really explained a lot, thanks so much. I have also developed a problem where I have to eat about every hour and not just a little snack or I get deathly ill if I take to long between meals but all my blood sugar and all that kind of work checks out okay. I've had too many bad experiences with doctors to even mention I've been treated like a drug addict and somebody that's crazy as if it's all in my head or something even though I have all these physical symptoms. I even get that rash on my face but it's more pronounced on the left side. So many times in the last 3 years I felt like it was only me and I was all alone.

Thank you so much for this, I've only just been referred to a rheumatologist after YEARS and I had no idea what to do to prepare.

Thank you for your channel!! Very helpful, I've been dealing with various symptoms since 2009ish, symptoms are increasing in amount and severity, waiting on blood work and to get into see a rheumatologist.

Thanks.. Always stay happy there whenever you are

Thank you for the video,I have seen so many doctors and specialist over the last 4 year and I’m finally being sent to a rheumatologist next week. I didn’t even know they existed. I will do what you said and take notes to bring with me and also make sure some comes with me. Happy New Year Paul ( Australia)

I have my first rheumatologist appointment in about 20 days, I’m super nervous. Apparently he’ll have to feel all my joints and that’s really weird. I’m scared, and I’m in pain but this helps me prepare. Thanks :)

Loved all of the tips. I’m going to share your video with some friends. Knowledge is definitely powerful. I get so nervous when I go for appointments. I spend more time trying to control my pain, emotions and other things that I allow to govern my outward appearance. The rheumatologist office is the very place to let it all out. Here’s the thing for me. The morning of my appointment 1. I work really hard to get my self presentable. I have to be squeaky clean of course. Takes so much energy. I’ve learn to take a good shower the night before and bird bath that morning. 2. I have to wear clothing that help me feel like a beautiful sun beam. ( this can help me emotionally but I have found, in the mind of the doctors they tend to express right out of the gate, how bright and full of energy I seem to have ). The way some doctors perceive things can be very black and white. 3. On my way to the doctor and even in the waiting room I am trying my best to hold myself together and stay composed. I don’t feel safe when I’m so vulnerable. Hmmm. 4. I am pleasant and grateful to everyone that sees me before the doctor ( the receptionist and nurse. Have to set a polite tone. Because, well they don’t deserve to be treated like crap??? ) Now by the time the doctor sees me...I don’t have time to peel back the layers of covering up I did to get me into their office. Nooooooooo. Then I forget the list that is in my pocket, phone or who knows what else. Hey maybe you could do a video on accepting our illnesses. I fight with denial thinking some how admitting my illness to myself means that I am excepting defeat. Like I’ve given up or something. Often forgetting that a search for a cure continues. What about a video about emotionally preparing for the appointment. Remember to come back with a response to a doctor saying something like,” Wow! You look great !” Having the courage or even allowing oneself to say...,”I really feel the total opposite.” Here’s another video possibility...What about actually working on ( and we might need the help of somebody that doesn’t have a chronic illness ) a true pain scale number. If we describe our pain...really explain. What would they rate it? This person has got to be trusted and seen you in painful situations. Well I loved your video. As always. I’ve loved to see you grow up right here. Allowing us to experience your journey young lady ( no longer ) a preteen. Lol. Keep up the good work.

Thank u so much!!! for all your videos. You You have really!!! HELPED me with advice I was looking for & u helped me by knowing I'm not alone. DEC 2017, I noticed a ulcer on my right finger thst I was diagnosed with secondary Ranyaurds disease, Lupus & Scholerdema (hard skin) & Painful!!! I also have low thyroid. I live in Santa Rosa California and this winter was the worst with being so COLD.

I really appreciate this video. I think this is a great guide for just about all types of doctors appointments. I've got my Rheumatology appointment here in a couple of days and I've made a note card with all of the things that you told to me to be ready to answer. Thank you so much, you are a hero!

I'm about to head in to my first appointment in December and lords know this will help me not go absolutely blank with stress.

It gladdens my to know that I'm not the only one wondering how to prepare for a rheumatological visit. After over 6 years in constant pain, I've been to dozens of doctor's without a diagnosis (the latest doc suggested that it may even be a new disease). So far, every test and image has come back negative, and neither NSAIDs, steroids, or narcotics provide any relief. I'm going to a rheumatologist next week, and if they don't find anything, I have to look forward to exploratory joint surgery. You make a good point with the faulty pain scale. I once ran 180 miles on a broken foot without realizing it, and even worked a 14 hour shift with a dislocated hip because my baseline pain drowned out the injuries.

Thank you so much. I have my first appointment coming up. I was in a car accident and through scans they found a blood clot unrelated to injuries. I'm 25 and I kept hearing I'm too young. After some blood test and months waiting and more blood test. I'm in the early stages of lupus. I guess I'm finding out I have it before actually having physical symptoms. I don't feel like I'm recovering from the accident after months, it's sinking in that these problems are related to my illness.

thank u so so much. just got my appt today and frigg i am nervous. this has really helped.

Thank you! I was just diagnosed with an autoimmune disease, but they’re not sure which one it is. My ANA was positive, my vitamin D was a bit low, and my white count and IgA are very high. A couple of years ago, they thought I had lymphoma, but I don’t, but going to an oncologist and the two weeks of not knowing was so scary. So I’m kind of reliving that. My internist wants to run more tests and she’s also sending things to the Mayo Clinic before I see a rheumatologist. I’ll try to be more prepared this time, it’s so overwhelming to try to fit all of your symptoms into one appointment. One week it’s my stomach, one week it’s my lungs, etc. I should keep a symptoms diary. I try to stay distracted as much as possible and tire myself out (which with the fatigue is very easy) while I wait. Update: A new battery of tests has shown that I’m positive for Lyme disease. It’s another great imitator like Lupus. I must have first been exposed 12-13 years ago on a camping trip. I’m really not the outdoors type. I don’t remember the tick bite, but I do remember the flu like illness afterwards. It was unlike any cold or flu I’ve had before, but I still dismissed it as a bad cold. It was all over body pain to the point that even being in bed would cause me to squirm, a high fever, light sensitivity, and of course-fatigue. It took this long to diagnose, and even after I found a doctor who was willing to dig deeper, it took another 4 years of specialists to find this out. All I can say is if you know something else is wrong, you have to keep being your own advocate, and you have to persevere.

Damn I wish I saw this yesterday. Great video!

Thanks for this information!!

Thanks for sharing this! Very helpful. Wished I saw this prior to my first appointment today. Suspect fibromyalgia. Will know more at 2nd appointment

Tomorrow is my first appt. To the rheumatologist thanks for recommendations I felt I am ready now.

Have my Rheumatologist appoint over the phone May 21st/2021…supposed to take 40-60 minutes…will take your advice and be prepared

I've been referred top a Rheumatologist for the second time now and the first doctor 2 years ago told me I don't have arthritis but didn't run any test. Now my primary tested me and turns out I am over the inflammation limit. (duh) I'm just excited to figure out what it is so I can treat it and live my best life.

This is so helpful! I'm about a month away from my first visit with a Rheumatologist and I just hope I finally get some sort of answer. And it wouldn't hurt if they could tell me that my hair will grow back lol

I totally wished you could have done this video about two months ago!! 😭😭

I am still in the process of diagnosis. Ive had joint pain for years but we always just thought arthritis but recently i developed the butterfly rash so my doctor sent me for bloodwork on friday and we are just waiting on the results then i will probably have to go to a rheumatologist

Thank you for this . I have my first visit this Wednesday

Thank you so much for this video. My first appointment is tomorrow. I am so nervous because I have been to at least 3 doctors now and they all say I have all the signs for lupus but they can't find it in the blood work. So I just want some answers because these pains have been going on my whole life and I am 16 now. I just really hope this is the start to getting answers

For one.. where do you find your shirts? also, I feel horrible today. sore throat, joint pain, fatigue, etc. As a person with lupus yourself, what do you recommend to help ease the pain and discomfort. I have noticed that my pain scale feels high, but i think I have gotten used to it, so i feel as though it is, "low," for me.. Take care. love your videos!

My appt is next month. Thank you!

great job

Thank you!

First appointment did not go well. The doctor talked to me very quickly and asked about my family history and once he heard my mom has rheumatoid arthritis he said that was probably what I had and prescribed me some medication. About a week later I was in the emergency room and had gone into kidney failure. That's where I found out I had Lupus.

I will see a Rheumatologist March 14 because I had a positive on my ANA test. This will be a different one that I saw in 2017 who diagnosed my Celiacs. I am not sure if I will get any answers.

I just want answers and I’m so scared for my appointment. I’ve been dismissed for years and then told it was fibro at 16 fast forward 3 more years and they finally ran my Ana and it’s positive. I made a google docs with pictures and my symptoms plus a summary of when certain things started and got worse but I’m just still so worried they won’t take me serious. It’s in one week

My doctor is getting my fibromyalgia retested since ive been getting sicker since I was 13. My Rhumatologist is tomorrow morning. Also, the 7/10 pain is my average. My ER trip was a 16/10 (+) and they said "it only goes up to 10" and I just said "I know".

Ha needed this my first appointment is in September

support from a pharmacy student in hk ~~

After my dad passed away December 11, 2016 coming home in January I started feeling dry in eyes mouth skin all over, and yellow tongue, I thought something was Seriously wrong and suspected Lupus among Shogrens, or I had no Idea what it could be (because February is a Dry month? weather here in the mountains). Tested (blood work) for EVERYTHING several times via doctor and hospital). Took Naistatin to get rid of What I thought was thrush (but wasn't according to my doctor). My doctor thought nothing was wrong, but I had Never been so dry. I stumbled upon your channel because of my scouring for symptoms and diagnosis. Subscribed cause you look (seem to be) like a good person. Still wasn't sure if Lupus was what it was. Doc sent me to a Ear Nose and Throat. He tested me for stuff they didn't and determined that it's probably just Acid. So he gave me a 14-refill prescription of Anti-Acids (that I still take) which has helped but still have a couple of symptoms (especially if I don't take it). However, my Doctor says NOT to take these Anti-Acids because they keep you from absorbing "minerals." I'm like, "I'm sorry, but I'm taking these Anti-Acids" or I'd feel miserable all the time. So, probably not getting all the minerals I need, but I'd rather not be in pain or agitation. Up until January, this year, I had always been fine chemically in my body. Only one major surgery in my life back July 4th, 2014 where my cecum, appendix, and 1/3 of my large intestines were removed due to a twisted bowel I never knew I had all my life from birth. This may be arising from the surgery 3 years before, but the docs know Nothing and do not care to speculate or tell me yes or no, why I have this persistent dryness or yellow tongue IF I do not take the Anti-Acids. I guess in the olden days, back in the past, I'd be a miserable person for the rest of my life :) Must have been hard livin back then.

Mine is on tuesday! I’m so nervous! I’m hoping they’ll know what it is but I’m worried they will send me home without answers!

I'm going on Thursdays and I'm nervous my pcp referred me to pediatric rheumatology because of my joint pain and everything and suspected ehlers Danlos syndrome and I've suspected it for about a year and I got referred a lot because I would have easy dislocations aka dislocating my shoulders like a J while stretching but my pcp didn't know where to send me although I probably should have been sent to genetics but maybe if the rheumatologist agrees on EDS I'll be sent to genetics

I don’t have my appointment yet. I am so nervous

I was going in for a surgery last year and I had to have blood work done to make sure I was ok for surgery, the blood work revealed an abnormality, high PTT. Started seeing a hematologist, she found lupus anticoagulant agent right away, then positive ANA, then she kept doing tests but not really telling me what they were about. then a few weeks ago she found "antihistone antibody" which I guess is another marker for lupus, after finding this third indication she has now referred me to a rheumatologist I'm seeing in about a month. I dont have a lot of pain, but I do have some unexplainable pain, I honestly remember very few times in my life I've ever not been tired. I am constantly fatigued, regardless of how much I sleep. No skin rash, but definitely photosensitive. If I'm in the sun, I burn very easily. I also feel miserable in the sun, it confuses me when people get so happy about it being sunny and hot out. Looking forward to finding out what the rheumatologist has to say.

What bloodwork should I be getting before or after my first appointment? I just got back positive ANAs and Antinuclear SS-B ab, I believe.

Gorgeous 😍

PAUSE @0:05 You’re gorgeous !! Ok, I’ll finish watching the video now 😍

Thank u so much. U r sooo cute😘

I was wondering which rheumatologist you're going to now? I'm here in Vegas as well and I'm struggling with finding one. I was going to Mitchell Foreman but he wasn't treating me at all.

Hello Samantha, would you recommend getting a blood work up and subsequent test results at hand before going to a rheumatologist?

Stupid question, but how do you deal with the anxiety of going to the rheumatologist for the first time? I've been dealing with sudden muscle stiffness for the past few weeks, and just got referred to see a rhumetologist. I am TERRIFIED of what they may find (like I have been crying from the anxiety/fear). Like I'm thinking worst case scenario (like bone cancer terrified). I do know that my initial blood test results are normal, but I'm still very anxious. It also doesn't help knowing that my mom passed from MS, and that thought is super scary for me. I've been a very normal, active (runner, figure skater, and gymnast) 37 year old, until this stiffness hit me. Thoughts?

Stay safe! Stay at home!

God bless :)

What was your ANA levels ?

My first rheumatoid arthritis doctors appointment was horrible he looked at me and said you don’t have a lupus I said when will I get the fillings back in my arm and in my right hand and he said I don’t know you’ve seen too many doctors already mind you I’ve only seen my primary care and an orthopedic doctor to rule out carpal tunnel that’s it they did bloodwork before I left and that’s all. For my second visit he looked at me I said you told me in my first visit that I didn’t have lupus he said that’s correct I don’t know what you have prescribed prednisone didn’t talk about the bloodwork that they collected nothing and sent me home I have one more visit with him and then I have no intentions on going back for me to meet him for the first time the anger that he displayed with me just being there never seen me before the only reason why I was there is because my blood work came back with my primary care doctor positive for lupus he doesn’t even wanna treat me. I have never experienced so much anger from a doctor that you’ve never met before it is the first time I explained it to my primary care and she said he has no reason to be angry with you because no one could find your diagnosis and that’s it this whole experience has been a nightmare

Wow, I thought you were Desi Lydic in the photo.

can a rheumatologist prescribe psychairitric meds if needed?

They only address 1 symptom at a time.

I have been diagnosed with fibromyalgia lupus and Sjogren's. I'm having a horrible time right now with dryness in my mouth. My teeth and gums are actually in a lot of pain. I can tell I don't have very much saliva in my mouth and I don't know if that's the reason for the pain. It's actually affecting my speech and my taste buds. I have tried every mouthwash mints gum and even the prescription Med to increase the lava but nothing is working. Now I'm trying to taper off some of the meds I take then I know can cause dry mouth like antidepressants and anti-anxiety. The pain in my mouth is dry driving my anxiety and causing depression. It's horrible dealing with this on top of the pain and fatigue I have in my body. None of my doctors can't explain why I'm having pain in my teeth. I'm wondering if anyone else has had pain in their mouth in addition to dryness? It's not a mouth sores it's just like a throbbing aching burning pain in mouth and gums. That would hate for anyone else to be going through this but I would also like to know I'm not losing my mind I'm on Plaquenil but haven't noticed a difference I'm right at 6 months. My rheumatologist she might take me off of it if it's not working but she doesn't want to start any kind of biological medicine in her words she doesn't know why she would be doing it. She was the only rheumatologist I could get in to see in my area.

I'm 14 and have been dealing with inflammation in my joints for this entire year. My neuromuscular doctor thinks I have RA. Went to the rheumatologist and was made to feel like I was crazy! I swear this lady told me I needed therapy! They are refusing to give me physical therapy until I come back. I now have 2 doctors who believe I have RA. These idiot rheumatologist are killing me

i am gonna b referred to a rheumatologist. i really donno wot to expect. head all over place.

Step 1. Don't take levaquin.

Inbox me now I will give you a free discovery of work with clients all over the world feeling this and there are better alternatives than what you’ve been told I would love to help you been there and there is an incredible light on the other end of the tunnel you’re in the tunnel