I feel like I'm dying

Posted by srodriguez @srodriguez, Jan 26, 2012

i am a healthy (I thought) 43 year old female. 2 weeks ago I was at work. Stood up. Got this pulled muscle sensation in my back around my bra strap area. I then proceeded to have chest pain, shortness of breath, flushed, sensation of hot liquid seeping out into my chest, dizziness, and numb and tingly all over my body. I felt like I was gonna pass out or die. I was rushed to the ER. After several tests, and an overnight stay, they discharged me the next day with Synthroid (thyroid just a tad low) and Flexeril for my back pain. I still had the shortness of breath. But they assured me my heart and lungs were fine. Did not do any x-rays or anything for my back. The next day I was pretty much laid out at home due to the flexeril. The following day, I decided to go back to work. Got up, took a shower, then I started having all the same symptoms as before. I had my son take me to the ER again. They did several tests, said my heart and lungs were fine. The doctor diagnosed me with GERD, and sent me home with Prilosec. I took Prilosec for 4 days, then my PCP had me try Protonix, which by the way, both of these gave me horrible side effects (confusion, delirium-hallucinations) and were not helping my stomach pain and nausea. So, she started me on Zantac, which worked wonders the first couple of days, but seems to have worn off now too. Also, after numerous testing, doctor said my Vitamin D was low, was 11, and should be between 30-80. So I started taking Vitamin D3–400 units. 2 weeks later, I have been to the ER three times, had an endoscopy just yesterday (doctor said everything looked fine, but sending off stomach sample for biopsy). Still taking Zantac, and Vitamin D. Trying to eat more foods rich in Vitamin D and calcium. I continue to have nausea, stomach pains, body very weak, losing weight, diarrhea, dizziness, flushed and feel like passing out. I can’t sleep, and feel very dehydrated. Every morning I feel like I’m dying with these symptoms. It feels as though it hurts from deep inside my muscles or bones, even my joints in my fingers and elbows hurt. Closer to noon, I feel a little better, try to eat a little something, then it starts all over around 9 or 10 in the evening, and keeping me up all night. I WAS TOTALLY FINE UNTIL 2 WEEKS AGO, THEN ALL THIS STARTED HAPPENING. CAN SOMEONE HELP ME PLEASE? I DON’T KNOW WHAT ELSE TO DO. I FEEL LIKE I’M JUST GONNA SHRIVEL UP AND DIE.

Interested in more discussions like this? Go to the Digestive Health Support Group.

If your mast cell counts are higher than normal you need to find an immunologist who understands mast cell problems. Mayo called me depressed and ignored my complaints at my initial visit so I ended up seeing an immunologist on my own in N.C. and then chapel hill diagnosed me.

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I have Celiac disease and some of your symptoms were similar to mine.

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I also suffer from an autoimmune disease. I have IGg and IGm deficiency. My my spine is squished and that is when I started having horrible pain. I was 47. I am now 57. I was not diagnosed with my autoimmune deficiency until I was 48. I always felt tired when I woke up my whole life. I now Have Fibromyalgia, pre-colon cancer (which has been removed) two months ago, acid reflux, low vitamin D, Pain in my stomach always. In the las three years my real problems started getting really bad. Every time I eat, I feel so full and so sick. I had trouble being constipated or having diarrhea. Mostly constipated. The worst of all of this is I now get super sick from eating so I don't eat much at all, but eventually I get sick from my food sitting in my system and not going anywhere. My biggest question and fear is; when I eat my temperature plummets to 94.5. When I eat I become very cold and sweat. I can't move and I slip into what I call a coma like state. I have been to so many GI doctors. They have all tried to help but no doctor seems to even comprehend why my temperate would drop so low. I can't work and I can't have a life, so of course I am very depressed. I ma in bed almost all day everyday. My thyroid is pretty normal but all my family has thyroid disease and take meds. for it. All my doctors say I am not in a level that would need thyroid meds. My thyroid is 3.5. My hair is falling out too. Is this going to continue to just be my life? Anyone have any ideas? I would be so grateful.

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Hello @hanark0068

I see that this is your first post with Mayo Connect and I'd like to welcome you. You certainly have some distressing symptoms and I can understand your concerns.

If you are comfortable sharing more, please share the following: What type of specialists have you seen? What sort of tests have you had for the digestive disorders (Endoscopy, etc.) Have any treatments been offered? Have you considered a second opinion from a large medical research center like a Mayo facility (Mayo has clinics in Minnesota, Florida and Arizona) or other medical schools?

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@srodriguez Hi, my friend. So much compassion for where you're at with you Light Chain Amyloidosis. Like me, you may well have Multiple Myeloma, or Gelsolin, of plain old Amyloidosis Light Chain. We have about the same signs and symptoms. And so do 4 of my sisters, and a fifth and her daughter have died of it (sudden heart death) And some other nieces, etc. Now, if you have Gelsolin, it is perhaps one of the slowest cloning autoimmune protein dyscrasias around. It often begins to be really noticed about age 50, or thereabouts. I am now 78, and mine is really hitting heavy now, but I am still looking at the green side of the grass. So what is it? First, it is primary and autoimmune. Started with your conception with a single protein from your parent's liver into their semen or egg, not with something else. Second, it is systemic. After the single cell clones itself a couple times, it dies in 2-4 hours, then deposits itself in ANY tissue in your body. Thyroid, brain, toe, skin, whatever. Third by the time you are 50 or so, it is dumping dead fibrils (little tubes made of dead pieces of proteins and filled with water) in your thyroid, brain, heart, wherever. Four, it will kill you if you don't die of something else first. A jealous lover. Car Accident. Almost any illness you have from this point on can be traced to having some mutation of your Amyloid in your body. There are some really good signs for the doctor to spot. You have some already. IGg and IGm deficiency. spine is squished. horrible pain. diagnosed with my autoimmune deficiency. Every time I eat, I feel so full and so sick. This is called early satiety. Anyway, the rest of what you show all fits. Now, there are new meds coming in just now to help slow down the progress and extend your life perhaps. Look up the Amyloidosis Foundation amyloidosisfdn.org on the net. or look on various sites. Find a top 1-AAA clinic and go there for diagnosis. Finally, most of my record is found, free, at https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" The safest format is .pdf, and almost any computer can read it. But most of all, enjoy your life. You may die suddenly this afternoon when the fibrils get into the nerve between you brain and your heart. But, and more likely, you may live another 40 years. Watch Dr. Martha Grogan's videos on Mayo, both the patient and the Dr. sides.

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@oldkarl

@srodriguez Hi, my friend. So much compassion for where you're at with you Light Chain Amyloidosis. Like me, you may well have Multiple Myeloma, or Gelsolin, of plain old Amyloidosis Light Chain. We have about the same signs and symptoms. And so do 4 of my sisters, and a fifth and her daughter have died of it (sudden heart death) And some other nieces, etc. Now, if you have Gelsolin, it is perhaps one of the slowest cloning autoimmune protein dyscrasias around. It often begins to be really noticed about age 50, or thereabouts. I am now 78, and mine is really hitting heavy now, but I am still looking at the green side of the grass. So what is it? First, it is primary and autoimmune. Started with your conception with a single protein from your parent's liver into their semen or egg, not with something else. Second, it is systemic. After the single cell clones itself a couple times, it dies in 2-4 hours, then deposits itself in ANY tissue in your body. Thyroid, brain, toe, skin, whatever. Third by the time you are 50 or so, it is dumping dead fibrils (little tubes made of dead pieces of proteins and filled with water) in your thyroid, brain, heart, wherever. Four, it will kill you if you don't die of something else first. A jealous lover. Car Accident. Almost any illness you have from this point on can be traced to having some mutation of your Amyloid in your body. There are some really good signs for the doctor to spot. You have some already. IGg and IGm deficiency. spine is squished. horrible pain. diagnosed with my autoimmune deficiency. Every time I eat, I feel so full and so sick. This is called early satiety. Anyway, the rest of what you show all fits. Now, there are new meds coming in just now to help slow down the progress and extend your life perhaps. Look up the Amyloidosis Foundation amyloidosisfdn.org on the net. or look on various sites. Find a top 1-AAA clinic and go there for diagnosis. Finally, most of my record is found, free, at https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" The safest format is .pdf, and almost any computer can read it. But most of all, enjoy your life. You may die suddenly this afternoon when the fibrils get into the nerve between you brain and your heart. But, and more likely, you may live another 40 years. Watch Dr. Martha Grogan's videos on Mayo, both the patient and the Dr. sides.

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Thank you Karl so much. You have given me more information in just five minutes than any doctor I have ever seen and I have been going to doctors here in Boston for more than 40 years. I will look up all the information you have just given me. I'm not happy to know this could be my end but I am happy to know what is happening to my body. I use to be a very active and a very happy person and then, one day I literally just went down and never got back up. I have one daughter and she too has the IGg deficiency. We just learned this. My mother is 80 and has Leukemia and hemolytic anemia, which they claim she is now dying from. She also has IGg deficiency, So everything you have just told me seems to be right on the money. Thank you again Karl.

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@hopeful33250

Hello @hanark0068

I see that this is your first post with Mayo Connect and I'd like to welcome you. You certainly have some distressing symptoms and I can understand your concerns.

If you are comfortable sharing more, please share the following: What type of specialists have you seen? What sort of tests have you had for the digestive disorders (Endoscopy, etc.) Have any treatments been offered? Have you considered a second opinion from a large medical research center like a Mayo facility (Mayo has clinics in Minnesota, Florida and Arizona) or other medical schools?

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I have had three upper endoscopy and four colonoscopy. No treatment has been offered. I think it's time I go to a place like the Mayo Clinic for real diagnosis. Thank you for the welcome. I appreciate your help and interest in my medical problems.

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@marychapman

I would recommend that you have your Vitamin B12 levels checked. I was constantly losing weight & lost 45 lbs, had no energy, fatigue, had neurological symptoms & gastrointestinal issues & I developed a bopping up & down type of walking. I was seeing many specialists and a neuromuscular doctor finally diagnosed my deficiency. I had no B12 left in my body. He prescribed 1000 mco of B12 each day and within 6 weeks some of my symptoms started to lessen or abate. I still have many other health concerns but I highly recommend that you give it a try as it can’t hurt to take it.

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Thank you Mary but my B12 has been checked and it's perfect.

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@mary1121

I have Celiac disease and some of your symptoms were similar to mine.

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I do have celiac and I am vigilant about no gluten and it's not hard because I can't eat. Karl has hit the nail on the head. My condition is serious. He says I have Amyloidosis and my husband and I feel he is 100% right. I have a confirmed diagnosis of fibromyalgia. Immune deficiency, arthritis, and so many other things that only a really severe diagnosis is going to be right at this time. I have spept at least 10 years going to doctors and they agree I am very sick. It has been documented that all my relatives have some for of autoimmune disease and some form of cancer. Thank you all for your help.

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