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Hello, This Is My Story ?


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Hello DINET, thanks for reading my story, I apologize that it is long. First I would like to thank those who made this site, then I would like to say that I do not wish any disease on myself, I am simply trying to find answers. From reading others stories here I do not want to be as sick as some are, but in researching my symptoms they kept leading me to these forums.

I have not worked in 3 years, between my back, asthma, heart, diarrhea, sleep apnea and stomach I simply did not get jobs and found fewer and fewer that I thought I could do. Years ago I went to a V.A. clinic for my back and stomach. The P.A. gave me omeprazol and said there was nothing that can be done for back problems, I didn't even get an x-ray which some nurses told me they questioned. As I got worse with back pain, diarrhea, heartburn and GERD my jobs began to change as my abilities changed. From not passing physical agility test as a firefighter to not being able to lug a camera around in the heat as a news journalist to not being able to stand long as a security guard to not being able to sit in the sit of an 18 wheeler for long periods. The V.A. doesn't allow patients to change doctors so 2 years ago I changed V.A. facilities. The new doctor immediately ordered test which came back as, multiple stomach lesions, duadenal spasms, aortic (stomach) valve problems, 2 fiberous masses in liver, 1+ inch gallstones, pancreas not visible in sonogram due to size of liver, moderate degenerative lumbar, thoracic and cervical disc, IBS, ventricular and superventricular ectopy. After 5 years, I had a doctor who finally listened, but it took a while. The V.A. is sometimes slow to give appointments, get the test, then get another appointment to be diagnosed and treated. Sometimes a 6 month period for each problem. He was concerned it was something bigger. That was my first appointment with him, he had it all lined up with what to do next. I waited 2 months to see him for the treatment, when I walked in it was someone different, my doctor was gone, hired by a larger private firm.

I thought OK, this guy will surely pick up where the other left off, the first words he said to me were, High, what can we do for you today. He hadn't even read the reason I was there. With such a long turn around time on appointments, I dumped all my proble,s on him again right there, I was frustrated as he wrote each one down then made comments. I came away with "You probably need a chiropracter but we do not provide that", when I told him I could sometimes hear my eyes move and that I woke up shaking he said it was probably psychiatric. The first doctor had already scheduled me for a colonoscopy, The P.A. that did the prescreening asked if I was working, had a job or was trying to get disability, At the time I was not, I was in the process of getting a job as a 911 operator. He said that he would look for cancer and nothing else, so the schedule for the colonocopy included 5 days, the first 2 no meds and not fat and no wheat and the last 3 were liquid diet only, this would keep my intestines from showing irratations from food. Polyps only no cancer, at least that was good news. At the same time they went down my throat, took biopsies of something and sent me home with paperwork for caring for gastritis and hiadel hernia but did not list them on my test results.

The 911 job was the worst thing in the world, fast, women yeeling at me, I tried everything I humanly could to keep going back but one day I simply didn't go back, I couldn't stomach walking into the place. I have since applied for disability. The doctor at the imaging facility wrote a nasty gram to my P.A. telling him to look at the big picture. I asked the P.A. if he would look into my terrible diahrrhea and at least confirm IBS for my disability claim but he said he needed to do test so he scheduled my for a barium enema, I called his nurse and asked if the colonoscopy i just had was better than a barium and she said yes, I should not have it, the imaging doctor again sent a nasty gram to my P.A. The doctor at the imaging center in the hospital pulled me aside and told me my doctor was practicing point and click medicine, then he sent another message to my P.A. about possible spinal stenosis. My doctor and I are at odds, and now he cancels every appointment, one was the follow up on degenerative disc diesease that the imaging doctor was trying to get him to notice, it took 9 months to get that apopintment, he cancelled it as well. Over the next 2 years I have become worse, and this is the letter I sent describing my medical problems to the SSDI doctors.

Aug 25th 2011

To whom it may concern,

When I applied for SSDI I listed 5 problems that kept me from working. They were not in order of severity. Those 5 problems were my back, diarrhea / IBS, asthma, heart and Liver. I feel it neccessary to explain these problems in depth.

My back is one of my two most troubling problems. I had seen the V.A. in ( If memory serves me correctly) 2005 or 2006 for my back. I was barely able to walk. I was barely able to drive myself as the pain of lifting my foot off the throttle was unbareable. The V.A. physician Dr. ------- prescribed anti inflamatory medication and a pain medication that seemed no stronger than aspirin. I returned several times until I was told by Dr. ----- that nothing could be done for my back, an x-ray was never taken by Dr. ------. I am unable to stand for long periods of time, unable to sit in one place for long, and unable to lift even moderate weight for a man. I had asked if I could see a new physician and was told no, I could complain but not switch. After years of back problems the only way I could get a new physician that would take a new look at the problem was to switch facilities. Over the years my back and other problems worsened, I switched to l------- where Dr. ------ immediately sceduled test for my back and other problems. The test returned with degenerative disc disease. Dr. ----- was gone on my second visit, I believe hired by -----. Dr. ---- is my new physician and seems frustrated at times because of my frustration. I am unable to stand for short periods of time or wash dishes without extreme pain, I lean on the sink and continue. My thighs go numb, my legs tingle, my left foot at times feels like it has a cell phone on vibrating inside of it, I feel like something occaisionally is crawling on or touching my legs but there is nothing there. I also occaisionally feel like there is a wet spot on my back and I do stumble on occaision but do not fall. During the day I switch between an office chair and my bed. I still do what I have to do, mowe the lawn on a riding lawn mower and ten minutes of weed eating without bending at the waist. It is painful and all I can do for the day. On talking with Dr. ------ I advised him I did not want pain medication as I was dizzy and sick feeling often enough and I thought pain medication would make that worse. In conversation with Dr. --- and Dr. ----, both mentioned that I appear to have prosthetic maralgia. I have a left ankle that on occaision has an instant very sharp intolerable pain when walking then instantly goes away, Dr. ------ stated it may be a nerve in my back and not an ankle problem.

IBS / gastritis / chronic severe diarrhea, Is the second of my two worst medical problems. Dr. ------- at the V.A. clinic has seen me several times for chronic heartburn and chronic diarrhea, he suggested it may be IBS. I have asked Dr. ----- if this is his diagnosis, he advised "it probably will be". My diet has been altered heavily. Other than a cup of coffee in the morning, the rest of my day consist of water, that includes with meals. For years I have continually altered my diet by removing sodas, tea, fast food ( maybe once every 2 months now ) spicy food, fried food, and acidic foods. I rarely if ever consume alchohol, I stopped drinking in the early 90's, alchohol would probably cause instant heartburn. I continue to have moderate / severe stomach pains and frequent watery bowel movements for hours, each with only a few minutes warning. I have had loose bowel movents soil my clothes many times. I travel everywhere with a change of clothes. My bowel movements also burn me, to the point that I bleed if I don't shower. I also have lesions in my stomach controlled only by omeprazole for the rest of my life.

I have had chest pains for many years. It has been looked at by two different facilities, the veterans clinic and Dr. ----- (when I had private insurance). I have had chest pains for so long I am used to them. They occur on heavy excersion. If memory serves me correctly the first time was in 1997. Since then, chest pains have become routine, and as no doctor has found a reason I no longer complain much about them. Also, My back combined with my overall health keeps me from most excersion so I rarely do enough to get these pains. If I were to suddenly be in a situation where I had to run, or swim for my life, or do any kind of medium physical activity I am sure they would return. My current heart complaints stem from my heart twitching or wiggling in my chest. At the same time this occurs I feel strange and weak. I am currently scheduled for another holter test and a treadmill test. I am weak and unable to do even moderate work. Is it my heart ? I am working on getting the V.A. to find the problem. I also get hot very easily and have very heavy heartbeats frequently. The last holter test showed rare ventricular and superventriculay ectopy. I am hoping the next holter test will catch the problem as it does not occur everyday. It can occur 15 times per day three days in a row or not do it for a week. The truck driving job I had from 2006 to 2008 pushed the limits of my ability and gave me chest pains, heavy heartbeats and shorness of breath frequently. I also can get rapid heartbeats at night or in the morning from just rolling over in bed or stretching from a yawn.

My shortness of breath has been very noticeable since 2007 and worse since 2010. I get short of breath from light excersion. I also get difficulty breathing from my asthma. I went to Dr. ---- in --------- with breathing problems several times. I now use albuterol with great relief. I cough very often, to the point of getting sore throats. The stuff that comes out of my lungs is very thick and sticky, it takes a huge effort to cough it up.

During my pre screening for a colonoscopy the doctor told me I have an enlarged liver and a fatty liver. I am not sure if my liver makes me sick but I have a very unusual problem. If I want to mowe the lawn I do not eat, it helps with heavy heartbeats and gettin tired. The effect of not eating and being able to do some work only last so long. Eventually I get very weak and shaky, when this occurs I must eat quickly. I have used a blood sugar device during these times and my sugar was from 90 to 110. Eating on the other hand, makes me sick with stomach and intestinal problems. Another situation that occurs is nausea, it can occur anytime without any reason that I can determine. I also wake up feeling like I have the flu but usually without nausea. I do not know if my liver is causing this, I hope not.

I still have further problems that I have yet to be checked for. Severe ringing in both ears and bad hearing that is getting worse, a torn right rotator cuff, knots on my bones, severe rash, eyesight that can be different each day, pain behind my right eye socket, an enlarged prostrate that is getting worse, and several times a year I go through days of being dizzy. Several times a year I can also hear, yes hear, my eyes move, they make a swishing sound when I fist wake up.

I no longer have the ability to handle anything other than very light task. I fear being caught in a situation that requires strength or fleeing, swimming from a sinking boat or running from a fire or defending my family from an aggressor. I still try to do as much as I can, but I always stay close to air conditioning, a fan, a chair a bathroom and a change of clothes. I spend most of my day dealing with my medical issues and completing simple daily task. I have recently sold my house because I could not physically keep it in good condition or afford it and I now live with my mom.

My family thinks I am a bum, my doctor hates me as much as I hate him.

Thank you for reading this, the timeline my not match, it is not because I am lying, it is hard to get everything correct and put it on paperm the same as it is hard to read a book, on the first page of a book my mind drifts off and I loose my place,

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So sorry, you've had such a horrible time trying to get the medical help you so desperately need. I'm not sure if dysautonomia is your problem - since you can't seem to get proper testing - but, non-the-less you seem to be as miserable as all of us here on this forum. And, that's why we all are here - we need SUPPORT, UNDERSTANDING and LOVE. We've been beaten up by the medical system and our friends and families don't understand. Speaking for myself - I've learned to not talk about what's going on with me - because, others "Just don't get it." I've had people in my life that I've opened my heart up to - to be rejected and tossed aside because they couldn't deal with my complexities - I happen to be a very sensitive person - which is a good quality, to me - because I feel other peoples pain and have true feelings for what others are going through. (Some people appreciate that in me! Others, I guess don't.) I guess, I tend to try to accept the differences in people and genuinly love people. (Sorry, kind-of going through some personal pain/hurt - right now.)

But, back to you - one issue I can see with your medical history is the fact that they have you on Prilosec. That destroys all the stomach acid that you have in your stomach and makes you not able to digest anything and get the nutrition out of it. Most alternative doctors say that one of the worst things a person can do for heartburn is take an antiacid because the problem is they need enzymes to digest their foods and if you don't have enough stomach acid - you won't digest anything. Then you start having more issues with GERD and malabsorption. This leads to chronic inflammation all over your body and the pain that you're speaking of. Some people have found that taking enzymes will greatly relieve pain even from some of the worst arthritis. Also, to heal your intestinal tract you may need to continue your diet of no glutten and maybe add some probiotics to put the good bacteria back into your intestines. Then, the next thing I'd suggest is to drink Aloe juice. You can get it at Wal-mart or a health food store. But, not too much because it - can cause diarrea.

My dad is a vet too and he's had similiar issues with finding good help. But, one good thing - is, you don't have to pay for the help you do get. Keep calling and bugging them until they get you in and take you seriously. Many of us, from people not understanding think we are lazy or we're making this up - that's not true. Whatever our issues, are --are mighty real to us and despite the reasons for our problems ---needs to be addressed. I hope that dysautonomia isn't your issues - but, if it is - there are so many people here that will give you that (((((HUG)))))) that all of us need. Hope you find answers soon.

Issie

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Wow. It's terrible to have a physician who is not taking you seriously. You must be your own (best) advocate. I find that being female--if I have a doctor that seems to be getting nowhere--if I take my husband with me, (must be a guy thing), then things start happening. I so wish you could find a good doctor. Some times we all have run into excellent ones who go above and beyond, and frankly some who have been very arogant and dismissive. I have IBS and GERD (am on Prilosec and Ranitadine and Miralax) but go from one extreme to days when I cannot get out of the bathroom--shiver, chill, get weak. And I never no when those days will come. My DH had bad diarrhea for long time and colonoscopy (bx and pathology) showed lymphacytic colitis. Hope you get a good, thorough eval. (it's taken me decades to get this far and have seen more doctors than I can count. I currently have a team of 9). Seems like all I do is go from appointment to appointment--some I may have a 7 hour drive to see (but do not see often--but when I do--the appointment is uninterrupted/very thorough and about issues with me/care plan).

Sending welcome and virtual hug. This is a wonderful place to find support, information and resources. Best wishes.

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I agree with Issie where it comes to the Prilosec. I was on that once, because my Zocor for high cholesterol caused gastritis for me, but like she said, when you don't have the proper digestive juices and acids, then your food isn't being digested properly. You have to wean yourself slowly, though, because your GERD will get worse before it gets better. The pharmacist told me NOT to go off of it cold turkey, because it would make it worse!

I have trouble with IBS, too, so I have to be very careful in what I eat. I don't eat a lot of meat, and if you have diarrhea, I wouldn't recommend eating to much roughage either. Yogurt with active cultures of bacteria is good, along with flax seed oil, that should decrease inflammation. I would stay away from acidic foods, citrus or even milk, which contains lactic acid. Eat foods that will give you bulk, like bananas, rice, even chopped meat. Potatoes are good, too and they are high in potassium.

I know what it's like having asthma, as well. You don't have the energy to do anything when you can't breathe. It sounds as if you need a good cardiologist and pulmonologist, as well, so that you can get down to the problems you are having with your heart and lungs.

Being dizzy and having constant ringing in your ears is enough to make you go crazy in itself. That also can add to your nausea. I have that, as well.

You have to be persistent, because you are your best advocate, so persevere and don't give up hope!! It sounds as if you need a good physical therapist, as well, with those back issues. I have a son who just graduated with his doctorate in physical therapy. They can work wonders. Don't have surgery unless you absolutely need it. There is always a risk. Try alternatives.

I hope you find some doctors who will start to listen and give you treatment. I'm so sorry you are having so many health issues, but like many of us, we feel your pain!!

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Thank you for your kind words, you have helped to keep me from some of the anger I feel at times.

The omeprazole (20mg twice a day) is not only for GERD, (which I have controlled by not eating after 5), it keeps me from having the terrible heartburn I have. I have had the stomach leesions for years and without omeprazole heartburn comes roaring back. I have been eating the yogart with cultures for years, I also have cloudy urine from potatoes so I have very few.

A question about POTS, Sometimes when I rollover in bed or when I stand up and stretch I get tachycardia, is this a sympyom of POTS ???

Again thanks for your help and replies.

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Thank you for your kind words, you have helped to keep me from some of the anger I feel at times.

The omeprazole (20mg twice a day) is not only for GERD, (which I have controlled by not eating after 5), it keeps me from having the terrible heartburn I have. I have had the stomach leesions for years and without omeprazole heartburn comes roaring back. I have been eating the yogart with cultures for years, I also have cloudy urine from potatoes so I have very few.

A question about POTS, Sometimes when I rollover in bed or when I stand up and stretch I get tachycardia, is this a sympyom of POTS ???

Again thanks for your help and replies.

Could be POTS, could be from being deconditioned (which is why I neede Phys. Therapy and am dreading hot spring/summer/fall months which seem to really knock me down). I do recumbent bike (per recommendation of my cardiac specialist in dysautonomia) when bike riding was no longer safe with me. Since I was doing treadmil in aquaciser with Phys T for 2 mos, I waited to start my rec. bike (stationary) since therapy felt good, but then I'd crash afterwards. Had to build myself up at slow rate but do 20-25 min/day and have added some arm exercises while pedalling. I thing the more I can ease up to vertical/build endurance with my upper airway obstruction, asthma, COPD, the more I'll be able to stand for kitchen/shopping/restaurants. Another trick heart specialist told me was when standing to cross my legs (as if having to pee really bad--not meaning to be offensive). He also told me not to stand still when standing--to shift from side to side/swaying from front to back (in efforts to try to keep the blood/fluid from pooling so bad and a faint). He called it 'sheveling'.

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