Discussions By Condition: General well-being

Too Many Symptoms, Baffle Docs

Posted In: General well-being 11 Replies
  • Posted By: ecoyote41
  • June 6, 2008
  • 04:15 AM

Hello out there, I am new to this site and hope that my experiences/symptoms stir some new thoughts with some unwitting neurologist or neurologist wannabe.I'm a 43 year old male in what most doctors would consider fantastic health. I LOOK alot younger or so I am told, I have an extremely well kempt physique, which is proving to be my demise. Doctors look at me when they enter the exam room and automatically assume I am malingering or faking my illness. For the past 20 years I have progressively suffered from a mystery problem. It started with buzzing and tingling throughout my body and an intolerance to heat and bright light. I have chronic joint pain in all of my large joints and blurred vision. This is an intermittent condition that occurs WITH major weather changes but is worse in the summer. I experience what I refer to as tremors(may not be the right way to describe this, but....) I tremble from the inside and it is followed by flu-like symptoms and extreme fatigue. It feels like I have constant voltage coursing through my body. I have night sweats that only affect my lower extremities (wierd). I have undergone a ton of tests that all return normal, MRI of every portion of my spine and brain, a spinal tap, CT scans and more blood tests. The ONLY test that revealed ANY problem was the EMG that shows I have peripheral nerve loss in both legs from the knees down. I have difficulty walking, kneeling and squatting....but no explanation why. I have normal urinary and bowel movements....other than inconsistent bowel consistency and pale/yellowish stool. The pain in my joints is tolerable but it is constant and I have muscle pain in my low back, hips, thighs and calves. (They always feel tight, like they are about to pop or tear.) I am accustomed to lifting weights on a regular basis, but I've become to tired and too sore to even attempt it. At onset 20years ago I weighed 243 pounds with a body fat index of 6%. I am holding steady at 200 pounds but feel weak and tired all the time. My small motor skills seem to have gotten weak, my hands and feet feel swollen and stiff all the time. I truly feel as though some of the tests performed just weren't read accurately since I am treated primarily by the VA Hospital which uses STUDENTS to treat us VETS. Like most of the hard working, bill paying Americans out here, I can't afford to go to too many more Doctors for new opinions. I have changed jobs several times to try and find a job that I can work without endangering myself or my coworkers when my symptoms do get unbearable. But when you deal with high voltage for a living.....those jobs are getting harder to come by. I wish all of you out there with unresolved medical problems the best of luck in finding a doctor that cares enough to take a personal interest in their patient and follow up on test results that just DON'T add up to the PERSON that's sitting in FRONT of them

E

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11 Replies:

  • and it is followed by flu-like symptoms and extreme fatigue. That little comment sends bells going off in my head about your condition. A comment like that makes it sound as if you could have chronic fatigue syndrome. It's very classical to have "flu like symptoms" in that condition. CFS patients usually are sensitive to heat and light. http://wwcoco.com/cfids/bernesx.html Fibromyalgia often goes hand in hand with chronic fatigue syndrome... and possibly you could have an issue with that. FM patients often can be very affected by the weather and will have pain in various places on their bodies (I had FM and had pain everywhere.. muscles, joints, sensitive to touch too). I suggest going to someone who specialises in FM and get them to check you for the FM tender points (these are painful under a certain amount of pressure). Going and seeing someone who specialises in CFS could be a good idea too as you "could" well have a minor case of it by the sounds of it.
    taniaaust1 2267 Replies Flag this Response
  • "For the past 20 years I have progressively suffered from a mystery problem. It started with buzzing and tingling throughout my body and an intolerance to heat and bright light. I have chronic joint pain in all of my large joints and blurred vision. This is an intermittent condition that occurs WITH major weather changes but is worse in the summer. " I find it common to hear about night sweats with these hard to diagnos illness. Weather changes affect my symptoms greatly at times. I too experience the buzzing and tingling in my body. Mine feels like vibrating from my core. I have been seen at the VA hosp many times and they told me i have an unknown illness like many vets do. I know this is probably not too helpful except you feel less crazy when someone else has shared your symptoms.PS I have angioedema as a symptom which causes blurred vision when the eyes are slightly swollen.
    joyba1 11 Replies Flag this Response
  • I am sorry for your problems with the VA - it is horrendous and a national tragedy IMO...veterans deserve so much more than what they are getting! I really feel for you.:( How long were you in the military? Did you have multiple vaccinations and injections? This can lead to autoimmune dysfunction. Also, have you been tested for Lyme? You show a lot of those symptoms, and it is often misdiagnosed. Lastly, I would get copies of your bloodwork and check your B12 levels...if they are under 400 you may have B12 deficiency and this is often underdiagnosed. B12 def can cause nerve pain, numbness, headaches, weight loss, gait problems, mental/emotional problems and much more. I would rule this out and if your levels are in the lower set of normal (normal is between 200-1100, a crazy wide range), ask for Methylcobalamin injections and see if your symptoms improve. I don't think B12 is a cause, but it may be a factor. You sound like you have some type of autoimmune dysfunction...I'd research the vaccine connection. And research Lyme. Lastly, where do you live? Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I was thinking further about your post and the others post as well and your comment that you were a VET. The mystery illness which resembles CFS and is said to be an overlapping illlness as its very alike .. in VETS is usually called Gulf War Syndrome (GWS). You dont necessarily have had to have been in the Gulf War to get this.. it is thought to have been triggered off by the vaccinations or certain chemical exposures. You may find the following interesting http://www.mcsrr.org/factsheets/overlaping.html More research is needed to see if Gulf War veterans and civilians who meet the criteria for more than one of CFS, FMS and/or MCS are suffering from separate disorders or just variations of one underlying but as yet defined common syndrome. All three seem to share reduced tolerance for a diverse range of physical, biological, chemical and mental stressors. In addition to chemical sensitivity, many also report heightened sensitivity to bright lights, loud noises, spicy foods, and physical touch, vibration and/or pain. Given how little is yet known about these overlaps, however, most physicians, insurers, attorneys and support groups continue to regard CFS, FMS, MCS and GWS as separate conditions. It is very important that anyone suspected of having any one of these overlapping syndromes be screened for all of the others as well as for other possible underlying complications and causes of their symptoms such as inherited mast cell or porphyrin disorders. Failure to do a thorough differential diagnosis may have serious consequences, as health care providers may overlook potentially treatable conditions that present with similar symptoms or recommend inappropriate treatments.
    taniaaust1 2267 Replies Flag this Response
  • Also look into Peripheral Neuralgia. Lots of nice people who know lots about it on Neuro Talk too.And I agree that our Vets should have the best health care out there- not what it available. My G-pa went to the VA hospital my whole life. It is just plain wrong!
    dizzy lizzie 192 Replies Flag this Response
  • Okay, I am sure people will catch on to me saying this repetively sometimes, but it happens more times than not: You are 43 years old and should be having great fun in life. You indicate via VA that you have been in the service and have had possible stressors in your life. Light yellow stools, colon spasms, electrical shocks, intolerance to heat and bright lights, musle aches, tendon stress and such should have an organic root cause in your body. Probably a combined source. Personally I believe fibromyalgia is a bag of symptoms (I lived with that diagnosis while I kept on searching for the truth and found it). Your symptoms could be a combination of disorders tied to neurological, thyroid, hormonal, and metabolic. One may be the main cause and the other the siblings. I have almost all your symptoms. I have many symptoms and many sibling disorders to my main metobolic disorder. However I double you would have one in my family unless you have had damage to your liver while in the military or you took something that impacted your liver such as extra amino acids for mucle building, had a viral infection or such. I recommend having endocrinologist or metaboligist from a good research university start on you if you can. Quite frankly you can damage your body by not having enough fat. Your weight and fat index of 6% may not have been right and played with your liver. What are the readings of your latest liver panels, BUN, creatine? Have you had ATP levels checked? Ask your doctors for all lab tests and results. Recommend take ownership and double check for what tests were run for your complaints start there. Google and find test norms. Are you really norm? Good luck will say prayers.:)
    Abbydoodle 138 Replies Flag this Response
  • Have you been checked for autoimmune disorders? They can do a blood test and check your antibodies.
    muffin top 15 Replies Flag this Response
  • I have all your symptoms plus a few more and I am very sorry and wish you luck. I quit my job Dec. 07, thought my tiredness was related to my very high stress job. I had planned several sabbaticals, thinking a little reprieve would illevate my tired body and I would be revitilized. Feb 08 had food poisoning from chicken. Thought I was dying for about 10 days, vomiting & diarrhea, laid in bathroom floor for 3 days. When I finally crawled to my bed all I could do was lie there and wish I was dead. For a month after I could only walk about 3 feet at a time due to weakness & pain in leg muscles and hip joints, then pain started in lower back, then upper back, then arms and neck. I was still having diarrhea and vomiting occassionally. My doctor had had a stroke and not practicing, I could not see a doctor until the last of March. Since that time I have been referred to many Doctors who have ignored my symptoms. I have been dx with FM, GBS, fatty lipoma anterior & lateral neck, large vocal cords, Myasthenia Gravis, then B12 defiency. I am now waiting on antibody results for MG, Tensilon test was positive. B12 was 192. Now taking B12 inj wkly, this will be my 4th wk, appt with the neurologist Oct 22 for more test. I sleep 3-4 for hours a night, I wake up several times during 3-4 hours feeling like I am vibrating or maybe a better way to describe it is like an earthquake. My vision is blurry. All my symptoms get worse as the day progresses. My fine motor skills have greatly diminished. It is hard for me to open anything. My hands fall off steering wheel and foot falls off gas petal, so I can't drive anymore. I have to depend on my children. It is hard for me to hold my head up for more than 5 mins, because of neck and shoulder tiredness and pain. Prior to Feb I was a very independent individual. I am now 49 yo, was 48 when this started. Worked 60-80 hrs a wk, ate healthy, went to gym, did my own yard work (3acres) and my childrens yard work. Had planned 3-6 week trips. Had to cancel all. To me this was suppose to be my prime time and it has absolutely been my worst time. Hardest thing is finding a Doctor that will listen to you as an individual and not brush you off, as drug seeking or trying to get disability, look at all lab work. B12 level 192 was drawn in May and not discovered until the last neurologist (Sept) ask had the Doctor addressed it. I have been told by ALL others MDs that all my test was normal. Get copies and look for yourself. By the way it was a plastic surgeon that told me, I needed to be tested for MG. Go figure!
    Anonymous 42789 Replies
    • October 8, 2008
    • 03:09 AM
    • 0
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  • Sounds like it could be Lyme disease. Check out the symptoms list at www.drerniemurakami.com on the homepage.Do you have any memory of a tick bite at any time in your life? Or a bull's eye shaped rash?
    puddlebug 5 Replies
    • October 28, 2008
    • 07:58 AM
    • 0
    Flag this Response
  • Lyme disease has all these symptoms and more. It is routinely misdiagnosed as autoimmune diseases like MS, fibromyalgia, chronic fatigue, or even Alzheimers or ALS or especially arthritis. The thyroid, immune system, cardio, digestive, muscular, skeletal etc etc systems are affected. If you aren't lucky enough to see the actual tick and don't know you had a bite, you will not know it is Lyme or even more of the diseases they carry with lyme.Lyme (new protocols) require months, or even years of antibiotics to completely rid the body of this spirochete, otherwise it just keeps recurring and the symptoms change and 'wax and wane'. look at www.canlyme.com
    silverangel 1 Replies
    • November 28, 2008
    • 04:33 AM
    • 0
    Flag this Response
  • Hello out there, I am new to this site and hope that my experiences/symptoms stir some new thoughts with some unwitting neurologist or neurologist wannabe.I'm a 43 year old male in what most doctors would consider fantastic health. I LOOK alot younger or so I am told, I have an extremely well kempt physique, which is proving to be my demise. Doctors look at me when they enter the exam room and automatically assume I am malingering or faking my illness. For the past 20 years I have progressively suffered from a mystery problem. It started with buzzing and tingling throughout my body and an intolerance to heat and bright light. I have chronic joint pain in all of my large joints and blurred vision. This is an intermittent condition that occurs WITH major weather changes but is worse in the summer. I experience what I refer to as tremors(may not be the right way to describe this, but....) I tremble from the inside and it is followed by flu-like symptoms and extreme fatigue. It feels like I have constant voltage coursing through my body. I have night sweats that only affect my lower extremities (wierd). I have undergone a ton of tests that all return normal, MRI of every portion of my spine and brain, a spinal tap, CT scans and more blood tests. The ONLY test that revealed ANY problem was the EMG that shows I have peripheral nerve loss in both legs from the knees down. I have difficulty walking, kneeling and squatting....but no explanation why. I have normal urinary and bowel movements....other than inconsistent bowel consistency and pale/yellowish stool. The pain in my joints is tolerable but it is constant and I have muscle pain in my low back, hips, thighs and calves. (They always feel tight, like they are about to pop or tear.) I am accustomed to lifting weights on a regular basis, but I've become to tired and too sore to even attempt it. At onset 20years ago I weighed 243 pounds with a body fat index of 6%. I am holding steady at 200 pounds but feel weak and tired all the time. My small motor skills seem to have gotten weak, my hands and feet feel swollen and stiff all the time. I truly feel as though some of the tests performed just weren't read accurately since I am treated primarily by the VA Hospital which uses STUDENTS to treat us VETS. Like most of the hard working, bill paying Americans out here, I can't afford to go to too many more Doctors for new opinions. I have changed jobs several times to try and find a job that I can work without endangering myself or my coworkers when my symptoms do get unbearable. But when you deal with high voltage for a living.....those jobs are getting harder to come by. I wish all of you out there with unresolved medical problems the best of luck in finding a doctor that cares enough to take a personal interest in their patient and follow up on test results that just DON'T add up to the PERSON that's sitting in FRONT of them E Hi Ecoyote, Most of this sounds like me at your age excepot that I was even worse with "too many symptoms to be believable". At that age I had about 175 symptoms. It turned out to be funtional b12 deficiencies no matter what the tests showed or diidn't show. Thjis hypothesis can be easily and quickly tested. I have almost full recovery now.http://forums.wrongdiagnosis.com/showthread.php?p=135906#post135906Come on ovewr th the b12 forum to discuss this and check out our large list of symptoms.
    Freddd 3576 Replies
    • January 2, 2009
    • 01:23 AM
    • 0
    Flag this Response
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