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Remeka’s Story (SMA Syndrome)

remekas-story-smaSometime this year in July of 2016, I was diagnosed with SMA syndrome. After about 9 months to a year, or possibly longer, I finally had enough of feeling so sick and nauseated from the time I woke up til the time I went to sleep, vomiting here and there, dry heaving more than vomiting, and experiencing rapid weight loss.

I had been to my primary doctor, who referred me to a GI. I had lots of tests, from H. pylori and CT scans, to endoscopy and colposcopy, to a celiac test and a whole lot more. Nothing was found, but I just kept getting sicker and more frustrated that the GI found nothing. Every time I talked to my primary doctor, she just went with whatever the GI said.

I started to just make myself comfortable, eating what I could to keep my energy up. I went from trying a liquid diet to sometimes not eating at all. The pain was unbearable, eating or not eating.

In June 2016, I collapsed at work. I couldn’t take it anymore. I was so sick and weak, I had be rushed to the hospital. I was admitted for a couple days under observation. The doctor again said nothing and was ready to send me home. I couldn’t take it. I fired the ER doctor and they gave me another one. This doctor looked into me. He took his time and ran a lot more tests. He ruled out everything and diagnosed me with SMA syndrome. Well, I thought because I got my diagnosis, I could finally get the help I need. The ER doctor sent me back to my primary, and I saw a surgeon immediately. That’s where everything went south.

The surgeon wanted to run more tests because, when he looked at my x-rays and other tests, he felt it wasn’t right. Three months later, all because I left that ER doctor, I am in pain with no help because my GI, surgeon AND primary doctor either don’t believe or don’t know what they are dealing with.

I don’t know what to do. I’m so sick. I’m 28-years-old and have always been small-built, only weighing in at 120 lbs since I’ve been an adult. Now I’m down to 96 lbs and still dropping. I really don’t know what to do. The ER doctor that diagnosed me referred me to UCI Irvine or Cedar Sinai, but also back to my doctor. I’m lost on what to do. I’m so scared I’m gonna die. Can someone help point me in the right direction please? I’m loosing hope and wondering if my doctor and GI, or my surgeon and doctor are right, and the ER doctor isn’t.

Remeka
California
Submitted 10/10/2016

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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14 comments

  1. My daughter was diagnosed with sma syndrome recently. She is 9 and has had problems since she was born. It took this long for them to finally find out what was wrong with her. They were able to find this diagnoses after a barium swallow test. The radiologist didn’t catch it. It was the g.i that caught it looking at the pictures right in front of us. It’s been 6 weeks since she was diagnosed and they said that she has to gain weight to get passed it. She’s currently drinking 4 insure shakes a day and has gained no weight. She still cries about her stomach hurting.

    • Thank-you so much for answering back to me. I’m so sorry your princess is going through this. As an adult it has been rough and a rollercoaster.. The pain that I endure is something I find myself on days saying why why me. No matter what iim uncomfortable so for a child to go through what im enduring I just can’t seem bare and think about .. It brings me to tears and I hope and pray for the best for you and the princess.

      I did about 4 barium test each failed miserably just could not tolerate anything going down. But some how another GI from an er found it. I was referred out to cedar siani and UCI Irvine but they don’t take my medical and paying for all the services I just couldn’t do.. So I went to my primary dr thinking finally I got a diagnosis I’m going to get the help I need. Well before I knew it I was seeing a surgeon so I felt there was no need to see a dr I cant really afford right now, my dr is helping me and now I’m seeing a surgeon .. well that wasn’t the case I had almost all the symptoms he saw the pictures of everything that the other dr had took. And decided since I wasn’t vomiting it couldn’t be SMA SYNDROME. I explained to him I dry heave most of my day I don’t vomit because I barely eat enough. The pain is all the time worse more so after eating no matter how big the intake. To keep my self from vomiting I eat smaller portions .. ive lost so much weight I can barely take care of me anymore . I feel like no one believes me. My last appt was last week and all they said was they can’t find anything.. my heart is heavy now I don’t know what to do I almost feel like they dont believe me. I want to go for second opinion I just don’t what to be turned down . I don’t even know if I should trust the dr that diagnosed me, was he right did he even really know . I’m so confused, I wake up and theirs days I say the only dr who took his time on me found a diagnosis is he right or is he wrong do I go where he referred me or do I just go with what my primary and gi and surgeon said .

      • No matter what I eat I can’t gain weight. I feel sicker and sicker every day. Getting around has been so hard. I rely on help of thime. I really hope your daughter gets better please keep me posted this isn’t sometjing easy to go through but just having someone who knows what I’m feeling or knows someone who is going through is just makes me feel less alone and gives me more drive to fight

        • Kelly Cummings-Harker

          Remarks, have you gotten any help? I am worried for you! I will be praying for you! Please find me on FB so we can talk!

      • Hello Rameca, I am 60 years old and have had stomach issues all my life. I too have had all those tests to no avail. Yesterday I went to a place called Serenity Health and Wellness. I learned so much I couldn’t sleep last night! I have always gotten better results from my health food store than any thing else. I have discovered some wonderful alternatives. You could still be allergic to gluten without having Celiac, I do. There is a test on line for that now and it’s only twenty five dollars for two tests. I am rubbing castor oil on my stomach, cover with towel apply hot water bottle for one hour. For me it’s three times a week. You have to heal your gut first and digestive enzymes will help. Two before each meal for me but I weigh more than you. Turmeric three times a day with meals. I too stopped eating and I found this only makes it worse in the long run our bodies need food to function properly. I had the runs for six months and was so sick and it was from the Zoloft my M.D. Prescribed. Prilosec is not good for us, causes depression. Water, water, water, very important. No more Coke for me either as I vomit too, and she asked about the color? When I described it she knew right away that my gall bladder and liver were not functioning properly either. Taking calm tabs for depression! My G.I. Doc is going to flip, but he will be getting the education from me this time. I need a new family doc too she suggested!

  2. My name is Brandi it took the Dr.s at Unc chapel hill hospital in North Carolina 3 yrs and several misdiagnosis before they figured out I had chrons disease.. the dr.s said I looked like death rolled over twice and they didn’t think I was going to live and at this time I was only 15 yrs old now I’m 28 still having trouble and have had about 7 surgeries they have removed my large intestine: rectum and anus and one of my ovaries …but I am thankful for the dr that pretty much saved my life…I hope that they find out what is wrong with you soon so you don’t have to go through everything I have ..tell them to check in to see if it might be Crohn’s disease related

  3. Whenever someone is dealing with a health problem that is unusual or complicated I recommend that they be evaluated at one of the big teaching hosoitals. That’s where you are most likely to find experts, and the latest treatments or even research studies. If your insurance won’t cover it, call them anyway; they may have a program to help with the cost. Good luck!

  4. I was just diagnosed with SMA Syndrome and am currently in the hospital. I went into the ER at St Joseph’s in Burbank. I tell you this because you’re in the area. I was admitted and have had all the tests, I have a team of doctors and surgeons working on a plan, and my pain and nausea are being treated. I’ve lived with this for three years and I know you’re hell. Please give St Joe’s a try! I have numerous chronic illnesses and this is my go to hospital (I live super close as well) and I’ve almost always had the very best care.
    Please feel free to reach out to me on Facebook (Tara Olsen and I never check my email) if you want any more information, or just someone to talk to who’s living it too. I’m wishing you the best, girl. Keep fighting!!

  5. My heart is with you. My daughter, 27 has SMA. It took 10 years of terrible suffering until it was diagnosed. The doctors treated her for an eating disorder (bulemia, anorexia..) Of course that was totally detrimental for her. Too late to treat although she had surgery. The doctors weren’t able to solve the problem. Find the right doctors immediately and have it treated. She is on TPN, but suffers from pain all the time. I wish you good health!

  6. Please see your GI and and ask them to send you to a surgeon to get duodenojejunostomy that might be a good solution for you.

  7. I am 47 years old and have been fighting this for over 2 years. I am 5’4″ and now only 88 pounds. After 3 upper GIs, a colonoscopy, 2 stomach emptying tests, three CT scans and so much medicine that made me worse I can’t count, a doctor finally thinks he sees SMA. I go in for a barium test tomorrow. I know where my pain is and I keep telling them. Stick to your guns. I am. I don’t want to leave my family
    You are in my prayers.

  8. I am a retired Pediatric Surgeon who has dealt with young patients with SMA syndrome. It is frustrating. But if it is truly SMA with partial distal duodenal obstruction on barium studies, it can be successfully treated by relieving the obstruction. This can now be accomplished with minimally invasive surgery without violating the intestine. There is an FDA approved research trial at University of California San Francisco for magnetic anastomosis of intestine that would consider SMA patients. If interested, let me know.

    • Dr Harrison, Can you please tell me more about this surgery? There are a lot of people with SMAS in CA without options. Having had duodenojejunostomy, myself, I would love to know that something better is available.
      Remeka, please let us know how you are doing? There is a large community here to support you. xo

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