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    Old 11-16-2015, 11:36 AM   #1
    Loremaria
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    Frustrated

    I have been thinking this has been going on since my 20's I am now 46. I started having trouble swallowing solid foods. So for two years I ate mashed potatoes and shakes. Anything that I felt would not choke me because I had already on chicken.
    Then came a crushing exhaustion. Taking a shower made me so tired I could barely get to my bed. They did tests. They said I was tired because I three kids. They said I was depressed. They said I had the Epstien barre virus so I had chronic fatigue. At 46 I now have neuropathy up to my knees in both legs. Carpel tunnel in both wrists, shortness of breath, (but have been tested for asthma and COPD and my lungs and heart are fine besides a elevated blood pressure) I just had back surgery where it failed and I got MSSA. Hospital stay and nursing home one month, and one month of IV antibiotics. Have had my throat stretched and they said my esphogus is damaged from medicines I was allergic to. I don't know. I have had to have a blood transfusions. My back is horrible but I refuse to have surgery again. I really honestly just want to know why I am sick all the time. I am tired and my bones ache if that makes sense. I am on pain meds that hardly touch the pain I am in, and am tired of labels being put on chronic pain sufferers. I have just asked my pcp if she will order a RA test and sjogrens as I hardly have saliva and my eyes are dry. I don't know what else I can ask for. Is it just the Epstien barre virus I have (I have also had shingles. Ouch) that makes me have this nerve damage in my legs and arms and hands? I am tired of being called lazy. I had a very good job before I got sick. Now I am on social security and can't do things with my 12 year old. So please I know they say I have autonomic neuropathy but that is a very broad term. It can Encompass many things. I really really just need help. 20 years has gone by to fast and I loose valuable time in life from this. I just want an answer.
    Thanks for listening to me.
    Lori

     
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    Old 11-16-2015, 03:19 PM   #2
    VeeJ
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    Re: Frustrated

    Lori, hi and welcome. I'm sorry for all the reasons that brought you here.

    I think asking your PCP to run several autoimmune tests makes good sense, but I also think that a board-certified rheumatologist might do such tests better, for starters. A board-certified rheumatologist would likely would use labs known to do these tests well, plus would run all pertinent tests, not limited to RA and Sjogren's. Also, rheums know the diagnostic criteria for all the connective tissue diseases, which all include *symptoms* in addition to lab results.

    I also think getting better answers could make a HUGE difference in your meds. If this is one or more autoimmune, a pain med won't ever get you where you need to be, which is a med (or meds plural) that SUPPRESS the creation of autoantibodies that are attacking cells & maybe organ systems.

    Re Epstein-Barre, I think nearly everyone tests positive, as most people have been exposed to the mono virus & thus could test positive.

    20 years is too long, so I really feel for you. Will your PCP refer you out to specialists? That's what I'd aim for. Please let us know what happens, and please stay in touch. Warm wishes, Vee

     
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    Old 11-16-2015, 03:41 PM   #3
    Loremaria
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    Re: Frustrated

    Vee,
    Thank you so much for your input. I have been tossed around so many doctors it is crazy. I have been going to the same pain doctor for 12 years. I am on gabapentin the highest dosage. I just don't know. The Rhumetologist I went to told me my back needed surgery so I am afraid to go back to him because my back is worse than before.
    It is funny because the doctor that did my back surgery said it would fail. I can't believe he said that. I should have got out then at that moment. Then it turned into MSSA and my back doctor was MIA. Last time he had his assistant see me I told him it is still messed up but they said it is all good and they wouldn't be seeing me anymore. So I am afraid to see any other doctor. I just don't know who to trust anymore. Plus it takes three months to get into see any of them. I will try though to go back to the original one as he is the one that said it was autonomic neuropathy. I will keep you up to date. Thank you so much for your advice.
    Lore

     
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    Old 11-17-2015, 06:25 AM   #4
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    Re: Frustrated

    I'm probably not understanding the sequence of your events very well... Did you have swallowing problems way in advance of your back problem? When did your leg neuropathy start, and was it imputed solely to your back problem? What was your back problem, compressed discs or what? Do you have any OTHER medical conditions that may have played a role in your neuropathy, like diabetes,?

    (My mind ran to those questions b/c I have a friend who had 3 major back surgeries & has neuropathy, but he ALSO has poorly-controlled diabetes. He also got a horrific staph infection after one surgery; staph LOVES diabetics, unfortunately. And his platelets crashed once during surgery, too, necessitating massive blood transfusions. Back surgery is just so huge, plus it adds another whole layer of complexity to sorting thru one's issues, so my heart really goes out to you.)

    When I finally ramped up to a new (better) rheum, I was asked to write up my medical history in my own words. I kept it very brief (less than a page) by using sentence fragments, bulleted lists, etc. I listed my symptoms & events in order of first appearance date, listing each only once, then appended comments to describe the problem a bit & to convey how often each recurred. Maybe you could write up something similar, just to make the ORDER of your problems jump out? (Even if the dr. doesn't want a copy, this list would help you answer questions accurately during your appt. & prevent you from forgetting anything big.)

    Moving on... There are some medical conditions that can cause swallowing problems. I just read a short list that included stroke, brain or spinal cord injury, MS*, Muscular Dystrophy, Parkinson's, polymyositis*, dermatomyositis*, scleroderma*, GERD (reflux), and certain medications. (I added an asterisk after ones I believe are considered autoimmune.) So if you do get new autoimmune tests run, I think you'd want MORE conditions considered & tested for, meaning not just RA and Sjogren's.

    Is your original rheum affiliated with a teaching hospital? I'd aim for someone like that, if possible, since large teaching hospitals are more likely to see EVERYTHING, and also to cast a very "wide net" when assessing a new patient. I think that's what you need: to have your entire history analyzed & to have a wide range of possibilities considered.

    As you say, that phrase your original doctor used, autonomic neuropathy, maybe is a "reason" or a "description", but without any indication of what's CAUSING IT, it's sure not a helpful phrase to share with a patient!

    I hope others chip in with more thoughts & with questions they'd ask, if in your shoes. And if there's anything we could do to help your organize your thoughts before your next round of appts, just give a yell, OK? Really looking forward to your updates & sending you hugs, Vee

     
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    Old 11-18-2015, 09:09 AM   #5
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    Re: Frustrated

    Lori, I have trouble believing that no one has tested you for autoimmune disorders before, and I truly think that might be where you find some answers. I would see a rheumatologist and get tested for ALL the autoimmune disorders that relate to your symptoms in depth, not just screening labs. Autoimmune disorders, such as lupus, are notorious for causing neuropathy. Vitamin deficiencies, like B12 and folate, plus low thyroid hormone and diabetes can also cause it, so all those things should be checked as well. Arachnoiditis is extremely painful and there are non narcotic measures that can help such as TENS or even implantable spinal stimulators that block the pain signals from the spinal cord. It seems a good rheumatologist to check out causes of your other pain and a good neurologist for maximum relief of the arachnoiditis and neuropathy would be very helpful. Getting thyroid checked for the fatigue is also crucial, as low thyroid is easy to treat. 85% of US population (adults) have EBV antibodies from exposure/infection, and is probably NOT the cause of your problems unless they can show chronic viral activity, not just positive antibodies. I do hope you get the help you need and deserve. Something has made you ill for 20+ years that has yet to be uncovered, IMO.

     
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    Old 11-20-2015, 11:58 PM   #6
    Costaliving
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    Re: Frustrated

    I'm so so so sorry for your situation ... being depressed about your current situation isn't a diagnosis, it's how a normal human would react to that unbearable amount of stress. When the treatments that you are receiving for the "diagnosis's" you've been given are NOT working ... it's time (in my opinion) to move quickly in another direction. Your shortness of breath ... is that after food? Certain foods? Always .. ?? EVERY symptom that you described is uncommon to doctors (but very common to us that have it) to GERD - LPR - Silent reflux. The havoc that acidic contents can have on the body (wrist pain, bone pain, extreme fatigue) is quite unbelievable. Either way, I'm pretty good at this stuff, been studying like a psychopath for a VERY longtime. Please feel more than free to ask an questions you need. I sincerely hope you find the culprit that is causing you so much pain. And I'm so sorry you're going through this. Warmest regards ...
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