"Mystery Diagnosis" - SMA Syndrome - Part 1

[ItsBabiiElla]

Hi Samantha, could you please contact us on the sma my niece has been diagnosed with it and we need your help. scrapmetalsinc@yahoo.com

[7ABIBIintaalbi]

I love her mother's Egyptian accent <3

[mermaidmelody305]

87 pounds?! Thats exactly how much I weigh and I'm 11!!

[jsmasterlubu3]

Samantha thank the Lord you are all healed today.

[kiers10m]

my friend has this..her name is Jennifer. One of the salons in my city are putting purple streaks in hair for $10 to help her and raise money for SMA awareness! I was the 2nd person to get my streak. Please pray for her!

[rainshowers77]

I had this for 1 year

[good1paula]

I have SMA Syndrom for years and had surgery and have not been SMA free for over a year. I have to see dr's at maya for more help, my dr's at Hopkins cant help me any more ofther post-op surgery and with all the SMA getting wores. I have to see a surgtone and other GI at mayo so we will see what happens

[jessysauce]

@good1paula Go to a GI in Boston. Beth Israel Deaconness has the best GI program in the country.

[VIPER534]

My symptoms have come back. Hurts heaps. On waiting list for Surgery. Don't know why the Dr's have mucked around so long. I was Diagnosed over a Year & A Half. ABIT SLOW On Their Part.

[msnoahxlukefan]

OUCH!!

[lushie]

I sometimes get this except on the right side and not always while eating... I weigh around 94 pounds and none of the doctors can tell me what's wrong. I don't think I have this but it has to be something...

[emogalinkheart]

Oh my god. I think that's what I have now. Since i was younger. Sometimes randomly holding my stomach and crying. oh wow i think i've found it. It doesnt happen every single time though. Sometimes its really small, sometimes its the most painful thing in the world. I didnt get it in a really long time, and it doesnt stop me from eating. But when it does happen, i dont eat for the rest of the day because if i do it will kill.

[QueenBeeBeeMarie]

@emogalinkheart

You may but,just bare in mind that it is extremely rare and unlikely. I would make an appointment with my regular Physician or a Gastroenterologist.

[goodbyekt]

I had SMA in the fall of 2010 I had to remain in the hospital for 7 weeks. It was the worst experience i have ever had; but i'm so thankful to be alive.

[MrFiglet]

An alarming and educational episode of Mystery Diagnosis. As a physician at a university student health centre, I see many young patients with abdominal pain. A surprising number do end up having serious pathology (eg. Crohn's disease), though I was unfamiliar with SMA Syndrome. While I see many young women with anorexia, I believe it is KEY to listen to patients and not make assumptions because a mistaken diagnosis can cost a life. Many thanks for Samantha for sharing her story.

[kathycuddles]

I think doctors need to watch this show as part of there study could really learn something from it and those who have SMA ,I send out my prayers to you, God Bless

[MrsTwilightAddict18]

@kathycuddles I'm training to be a doctor and I LOVE this show. We don't really learn about these syndromes in med school, so this is pretty much the only way to learn about the less popular (widely known or recognized) rare diseases, disorders, and mutations.

[MrsJSCarlile]

I was diagnosed with SMA syndrome on November 15, 2010 and had surgery November 19, 2010. I am at home recovering. This is a serious condition that needs to be treated immediately. I am 44 years old. Surgery was only 4 hours. I thank GOD the ER doctor checked for diverticulitis and ordered a CT scan, wherein they found SMA syndrome. The longer left untreated the more complications that arise. Low back pain is also one of the symptoms I had. I lost 30 pounds in a month. This was an acute onset.

[frozenxriver]

@MrsJSCarlile Thank God you are alive. God Bless and I will pray for a good recovery

[dionstrezlecki]

@MrsJSCarlile how is your condition now? ive just been diagnosed with it i think...

[dionstrezlecki]

@MrsJSCarlile hi mrsjscarlie so nearly a year on how are your symptoms now?

[MrsJSCarlile]

@dionstrezlecki - I am approximately 95% better. I have not had ANY of the problems others seem to have had after their surgeries. My doctor was a blessing. My doctor knew what my condition was immediately, treated it immediately and made sure I was completely informed of my condition. Furthermore, he was the most kindest physician I have ever had the pleasure of meeting. I was extremely blessed to have him. I must still watch what I eat at times, however, that's a small price to pay!

[dionstrezlecki]

@MrsJSCarlile thats is very good to hear, i just had my sma rerouted and unfortunately 4 weeks post op symptoms still remain :( so i guess the duodenjejostomy or whatever will be my next step...very positive to hear it has helped a lot...

[RedViolin87]

@montanerfan10 - With only ~500 recorded cases in history, a demographic of 0.013% and a mortality rate of 1:3, SMA Syndrome is one of the rarest disorders known to medical science. Currently, it is recognized by the Canadian Rare Disease Foundation, but not by the US National Organization for Rare Disorders (NORD).

[PrincessSweetheart95]

YAAAY! I missed this on Monday! I have this syndrome!

[montanerfan10]

Just saw this episode last night. very intresting.