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
@analrodriguez288423 күн бұрын
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.
@susanchiradza573825 күн бұрын
Thanks for sharing im struggling with this desease sometimes i cry
@shanadagnysiapАй бұрын
I’m on a biological too what’s Tracy’s last name
@Ydy-d7uАй бұрын
Thank you for sharing your journey. The medical field needs to learn empathy.
@strigiformthunderstormАй бұрын
Thanks for sharing your story!
@DONALD1951Ай бұрын
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.
@saxgirlhornboy6458Ай бұрын
How about SGLT2 inhibitors for T2Ds * on ketogenic diets * with non-diabetic glucose levels (A1c < 5.5), and *normal insulin levels?
@HopeChirwa-ww8wpАй бұрын
Thanks so .much my child has been diagnosed with lupus, she's 10yrs old
@Dmitis-nk7xi2 ай бұрын
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
@KaterineDavid-i3s2 ай бұрын
holding my phone and trying to lay down isnt a thing no more im uncomfortableeeeeeee
@amandapoland16192 ай бұрын
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.
@Novastar3142 ай бұрын
Thank you darlin❤
@sonjastarr13643 ай бұрын
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.
@LiaBunny933 ай бұрын
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 ❤
@ExchangeCME2 ай бұрын
Wishing you the best of luck!
@Gpacharlie4 ай бұрын
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.
@scottcarter81552 ай бұрын
I was cut to a 1/4 of the strength of what I was taking.
@Gpacharlie2 ай бұрын
@@scottcarter8155 Wishing you the best, Bro!
@Gpacharlie4 ай бұрын
Thank you for a patient perspective. Most search results yield biased perspectives from non sufferers.
@davehadenough54784 ай бұрын
Bring It On!!!
@1984musicman4 ай бұрын
Does a high ANA reading always mean lupus??
@KetchupSamurai4 ай бұрын
My new love & friend has lupus...this breaks my heart
@Raya-55445 ай бұрын
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
@grizzly6185 ай бұрын
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
@byonanebyeblessing52185 ай бұрын
Please can someone help me financially am broke coz of lupus n i have no money for my next treatment 😢
@williamscherer31855 ай бұрын
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.
@IsraelVargas-u6z5 ай бұрын
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
@enriquegraf50786 ай бұрын
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
@saphire76936 ай бұрын
How did you get your hair back?
@lions00976 ай бұрын
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.
@VasitiNailoloWaisu6 ай бұрын
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.
@nicolemcloughlin77667 ай бұрын
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
@scottberg53237 ай бұрын
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
@ExchangeCME7 ай бұрын
We hope this video helped! Wishing you the best!
@TaylorMade1007 ай бұрын
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.
@andrewlongbottom56217 ай бұрын
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 .
@andrewlongbottom56217 ай бұрын
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 .
@amariejones40387 ай бұрын
@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!!!
@sujayashetty47087 ай бұрын
Thank you for the information Doctor
@ExchangeCME7 ай бұрын
Welcome!
@juliabanks52908 ай бұрын
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.
@AngelINTheMatrix8 ай бұрын
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 😢
@Skye-Cabbit8 ай бұрын
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❤
@judyholden94399 ай бұрын
You are a very good speaker!
@kyrapeters95959 ай бұрын
This video is so helpful, thank you for posting it.
@ExchangeCME7 ай бұрын
Glad it was helpful!
@straighttothedisco9 ай бұрын
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!
@lesliemcmillan29719 ай бұрын
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.
@jameskelly70227 ай бұрын
My pulmonologist gave me a shot of Fasenra, a biologic, a week ago. Too early to tell if it helps. It's supposed to destroy IL5 antibodies. The shot isn't cheap.
@georgecline2769 ай бұрын
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
@Hanna-s5j9 ай бұрын
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.
@Hanna-s5j9 ай бұрын
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.
@innabulatova413810 ай бұрын
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.
@innabulatova413810 ай бұрын
Just wanted to add that the week I got diagnosed, 2 more girls were diagnosed. And in general doctor is shocked just how many more cases appear. I think the stress factor might be the real trigger, yet I don't know how to tell if I am stressed. Even if something explodes in the background at night, I would just turn on the other side and keep sleeping. I thought I was handling things pretty well
@innabulatova413810 ай бұрын
And sometimes I would say inappriopriate words cursing r*ssians when air siren starts. But it is normal as for me
@innabulatova413810 ай бұрын
What would be measure of stress to cause lupus?
@heatherp134010 ай бұрын
Hi what test did you have done to show the mutation d816v? And how did they test
@ExchangeCME10 ай бұрын
Thank you for your question. Systemic mastocytosis (SM) is diagnosed using several criteria determined through an analysis of the patient’s blood and bone marrow. First, a provider will test the serum tryptase level in the patient’s blood. Based on those results, the provider may choose to test the patient’s blood and/or bone marrow for the presence of the genetic mutation (KIT D816V) that is very common among patients with SM. For more information on SM diagnostic testing and other patient resources, visit The Mast Cell Disease Society at tmsforacure.org/tests/.
@cskiles31810 ай бұрын
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
@sneharahman443310 ай бұрын
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.😢😢😢