i used to had asthma when i was, a baby until they found a diet idk. and fighting my asthma was abit tough but i managed to beat it

Hi. I identify with you. I recently was diagnosed with Indolent Systemic Mastocytosis. Now I under car of an hematologist/oncologist. He is not specialist in this rear disease. I live in Miami , FL . I don't know how to find a Dr who knows and understand my case. I appreciate your testimony. Blessings.

Thanks for sharing im struggling with this desease sometimes i cry

I’m on a biological too what’s Tracy’s last name

Thank you for sharing your journey. The medical field needs to learn empathy.

Thanks for sharing your story!

I just got diagnosed with severe asthma.. I get flares about once a week with lots of mucus.. takes awhile to cough it all up.. hours.. not fun.

How about SGLT2 inhibitors for T2Ds * on ketogenic diets * with non-diabetic glucose levels (A1c < 5.5), and *normal insulin levels?

Thanks so .much my child has been diagnosed with lupus, she's 10yrs old

I had asthma from age of 4 (3 months before my 4th bday) and it was horrible till 7.. I had tonsel surgery and it stopped.. today I am 20, and I even smoke, I have problems only at morning or when I lay

holding my phone and trying to lay down isnt a thing no more im uncomfortableeeeeeee

My partner just thought I was lazy. He was extremely abusive. I got into another relationship and at first he wA good but then he resented me, he started cheating but got me pregnant and treated like crap. We coparent today and been great being ble to coparent well. My lupus isn't controlled well and my mom Dr shames me and says I talk about it too much. Which is so wrong. I pray for all of us.

Thank you darlin❤

I could have swore I just heard her say that both hospitalization and death from covid has increased. The statistic on screen says that hospital admissions went DOWN. Am confused.

I’m going to find out on Saturday for sure if I do have that it showed up on my doctors notes rheumatoid arthritis and lupus but I’m scared what’s going to happen next. I’m depressed and anxious I can’t stop crying thank you so much for this video it really helps me a lot ❤

Chronic pain, often severe, especially mornings is the hardest thing I have ever done, and I have done some hard things. Now at 23 years of chronic daily severe pain. Opioids help a lot but I am only allowed half of the most long term effective dose now. VA rules are under 50 mme. One day I hope we will have understanding and effective advocacy. One benefit is that I am sooooh looking forward to heaven.

Thank you for a patient perspective. Most search results yield biased perspectives from non sufferers.

Bring It On!!!

Does a high ANA reading always mean lupus??

My new love & friend has lupus...this breaks my heart

what's so shameful about having a disease ?? I didn't understand that at all , because now you are sick and then on top of that you feel shame for having it !!??? What kind of masochist kind of person does that to themselves ? that's terrible

I have the same disease and almost identical journey. I don't find the antihistamines that helpful but they do help to a certain degree. Good luck

Please can someone help me financially am broke coz of lupus n i have no money for my next treatment 😢

I have Lupus. Painful. Fibromyalgia. Getting arthritis in my thumbs. Hands. I don't have a Dr to treat me. Original Dr. Has passed away.stress kicks off episodes of pain. Anxiety, is a big part of it. Day by day I live.

Amanda, please 🙏 take care of yourself and always keep medicine with you i was always getting bronchitis and I didn't know why until I went to hospital told i had asthma that's how I found out stay safe and strong ok

I have fibromyalgia and I got blood work done for lupus it came back normal but I feel exhausted and joints hurt so bad my face burns and itches

How did you get your hair back?

What are your feelings of a score of 2000 being discovered AFTER having been on statins for 25 years- can the statins have caused the calcium? 58 yo males- ldl level of 70.

Hello Amanda. I am Vasiti Nailolo from the Fiji islands I am 51 yrs old and I have asthma all my life. When I have severe asthmatic attack, I'm always admitted in Colonial War Memorial Hospital in Suva. My medication is always repeated nabs and consuming prednisolone tablets. and other tablets. It's really tiring to be suffering from this short of breath sicknness al my life. I wonder when it will end.

My hands and fingers are really painful, I was dismissed by many doctors was accused of wanting pain killers, I didn't. I wanted a diagnosis.. then many Dr's were trying to tell me what symptoms I was feeling so they could be right about a misdiagnosis.. I knew I had lupus I knew I'm my gut.. they told me I had MS, I had psoriasis. rheumatoid arthritis, every other autoimmune disorder than lupus.. I understand exactly how you feel.. I hope you stay well and God bless

Logical and practical. I have smoldering myeloma and was started at 40 Dex with KY and plan to go three months and then see what progess is achieved. Thanks

I just had a conversation with a Rheumatologist that was similar to your first one - rushed. I’m kinda confused and want to go somewhere else.

My 3 year old grandson has systemic mastocytosis it’s been terrible with hives ,flares, itching, blisters. He’s now taking omalizomab and it has vastly reduced the symptoms but I pray for cure , thanks for sharing I wish the best for you, my son and daughter in law need to speak with people such as yourself .

Hi , my 3 year old grandson Ralph has this terrible disease he’s now on omalizomab , it has much improved his symptoms but I pray for a cure , thanks for posting your case .

@ExchangeCME PLEASE HELP! There was a Woman named Resa on a previous video regarding her Lupus diagnosis. I live in Brooklyn and would like to get in touch with her regarding her Rheumatologist. Thank you!!!

Thank you for the information Doctor

Yep, doctors can be very dismissive especially when it comes to black women - and maybe women in general. I am going thought this now. My doctor just sent me an oh well email that was so unbelievable. "You have Lupus so maybe if you treat that hang nail you wouldn't feel so horrible." no kidding.

Second know I know three people that got the covid vaccine that are immunocompromised and now the problems that they had like lupus and others their condition has exasperated so bad that they're literally bes ridden now. I don't think anybody should get it unless they hate themselves 😢

I really wanna drop in here and emphasize advocating for yourself. If a doctor’s treatment isn’t working, or if you feel they aren’t doing enough for you or if they aren’t asking the right questions, speak up about it or get another opinion. I went through 7-8 different doctors to get a diagnosis. I’m thankful for your story and this video❤

You are a very good speaker!

This video is so helpful, thank you for posting it.

This was a very reassuring video. I already have an auto-immune disease, and I was kind of pushing against lupus despite having such a strong sun “allergy”. I had such a bad joint reaction recently, and hair loss and asthma flair up. I’m getting referred to a rhum this week, and I’m 90% sure it’s lupus. I am so happy a gen doc that I saw recognized the symptoms right away. I was walking in knowing I had lupus but I so badly want to believe it could be something else, it was tough getting the call that I absolutely need to see a rhum after my blood tests. She held me so gently and told me that she wanted to be sure it wasn’t chronic and I’m happy she did but I could hear she was dreading calling me. I wanted to console her! lol I wanted it to be something else. I actually got a weird symptom during my flair of my eyelashes growing extremely long. I was happy about that until I learned it’s an SLE symptom LOL. I get no peace!

I have "extreme eosinophilic asthma". I'm currently dealing with mucus as thick as chewing gum. Trelegy and albuterol do not help much and Tezspire has now caused anaphylaxis. Not certain where I go from here.

I've been going through a lot with this for the past week. Thank you for explaining it because now it makes so much more sense on what had happened and how The team wants to handle the situation

Would you mind to share what testing did you had and what type of meds are helping you to avoid reactions from happening. Thank you.

I'm please that you finally got diagnosed. Iam suffering from similar problems reactions from food -to environmental chemicals , perfumes medications and so on. Still battling not only with doctors but even some in my family not accepting this as a real but unfortunately saying: it is all in my head that iam overreacting panicking. It is so hard to live a normal life.

I guess it is always the emotional side of it that is the hardest. I got diagnosed 2 weeks ago. But I got symptoms like a year prior. It was a joint pain, but I thought I just slept on a finer or an arm and it got stiff. I did experience tiredness , but I thought it is just laziness started and a little stress from the war kicking in (I'm from Ukraine, not far from frontlines, daily sirens, weekly explosions). I just was able to explain everything until joint pain spread to multiple joins and having a dog I would sometimes be limping a lot having a hard time keeping up with my dog and I also had to tie thr leash around arm because I ciuld not really hold him. I got to a doctor at that point. I got 4 differebt diagnosis and wrong treatments for 2 months making me even sicker. Then I did some self-medication with steroids which revived me and I went to another new doctor... but only because my mom begged me and I chose a clinic with McDonalds on the way. I got my diagnosis and it seema fine But now I have to go to all these different doctors and none of them had patients with my diagnosis in their practice. They say it does not matter. But I know it does. Plus, it is a bit hard to get pills due to the war.

Hi what test did you have done to show the mutation d816v? And how did they test

It’s a hard time trying to figure out. Dr suspects . I’m so weak loss of hair swelling. Blood work show kidney numbers high. Just so much. My red blood cells are so low :( hope I can get through to finding out

Is there anyone who will help me? My ANA is negative, anti ds dna, crp, protein in urine is all normal.creatinine in blood also normal.but i have anemia,platelets and WBC are normal.Hb is 10.66.but i have low grade fever,knee pain(not so much high), i take calcium for 2 months but it is not totally cured.But the pain is little bit lessen.but recently i also feel the pain on my left hand joint.i have no rashes in my body,no sunlight related problem.But when it is winter i can see red spot on my leg,in summer the red spot becomes vanished.Doctor said i have no lupus.but I'm little bit worried about that.My ESR level is 33.😢😢😢