Discussions By Condition: I cannot get a diagnosis.

no one seems to know

Posted In: I cannot get a diagnosis. 26 Replies
  • Posted By: igiveup
  • February 10, 2009
  • 02:27 AM

Hoping someone can help, I am a 42 year old woman and since the birth of my daughter 2 years ago am suffering with pain. I saw a neurologist a fw month after delivery for leg numbness/pain diagnosed with femor nerve damage, only opton surgery, I passed. Anyway about 8 months later I started with severe pain in my left eye, like hot pins, my eyes cnstantly teared and my vision declined, saw an eye doctor, he said he had no idea, and prescribed medicine for dry eye, imlanted cologen and sent me away, went back with the same symptoms except now I had blindness in that eye, he said occular migranes. A few months later I am having numness and tingling in my hand, a few months later, pain and weakness in the left hand. PCP says he thinks it migt be ms, a few months later the eye pain has resolved as well as the hand pain, but now my left knee is on fire. Back to the pcp he hinks it may be ms (again). Now, I have constant absoltely no relief in my left leg, and in my neck, that pain radiates down to the shoulder blade on my left side. A little bit of cognitive difficulties, sed rate is elevated, and constant pain. At this point I am on Ibuprofen 1200 mgs a day, Lyrica, and Vicodin, still no diagnosis, no tests even to get to the bottom of it all, my pcp cals me an engima. I have never been sick in my life and not quite sure how to handle all of this, besides the pain I am constantly tired and grumpy. Any suggestions, please, I am open to. I need help and direction as I do not know where to go for a diagnosis or help. Obviously I have never been on a site like this before and am rambling, my appologies. Honestly open to any and all suggestions.

Thanks,

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26 Replies:

  • Sounds like Multiple Sclerosis. Also could be fibromyalgia or osteoarthritis (less likely). Do your symptoms get noticeably worse in a hot shower? If so, this is a good sign that it's MS. A brain MRI usually shows typical white matter lesions called Dawson's Fingers that would help confirm the diagnosis of MS. Steroids are a good treatment for MS exacerbations; there are other more expensive treatments and plenty of alternative treatments. I would highly recommend getting your Vitamin D level checked as this has been found to be deficient in most MS patients, and may even have a causal link to the disease.
    medstudent111 1 Replies
    • February 10, 2009
    • 04:31 AM
    • 0
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  • Hoping someone can help, I am a 42 year old woman and since the birth of my daughter 2 years ago am suffering with pain. I saw a neurologist a fw month after delivery for leg numbness/pain diagnosed with femor nerve damage, only opton surgery, I passed. Anyway about 8 months later I started with severe pain in my left eye, like hot pins, my eyes cnstantly teared and my vision declined, saw an eye doctor, he said he had no idea, and prescribed medicine for dry eye, imlanted cologen and sent me away, went back with the same symptoms except now I had blindness in that eye, he said occular migranes. A few months later I am having numness and tingling in my hand, a few months later, pain and weakness in the left hand. PCP says he thinks it migt be ms, a few months later the eye pain has resolved as well as the hand pain, but now my left knee is on fire. Back to the pcp he hinks it may be ms (again). Now, I have constant absoltely no relief in my left leg, and in my neck, that pain radiates down to the shoulder blade on my left side. A little bit of cognitive difficulties, sed rate is elevated, and constant pain. At this point I am on Ibuprofen 1200 mgs a day, Lyrica, and Vicodin, still no diagnosis, no tests even to get to the bottom of it all, my pcp cals me an engima. I have never been sick in my life and not quite sure how to handle all of this, besides the pain I am constantly tired and grumpy. Any suggestions, please, I am open to. I need help and direction as I do not know where to go for a diagnosis or help. Obviously I have never been on a site like this before and am rambling, my appologies. Honestly open to any and all suggestions. Thanks, Are all your problems on the left side only or do you get tinglings etc on both sides even if uneven?
    Freddd 3576 Replies
    • February 10, 2009
    • 11:07 PM
    • 0
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  • Okay, realizing that the internet is an extremely poor source for obtaining diagnostic evaluation, please tell me more definitively what you mean by blindness in the affected eye. Does it primarily affect your central vision, your peripheral vision or both? Does it seem like you are looking though smoke or a dark lens or is vision altogether absent? Is the blindness constant or intermittent? Do you feel pain behind the eye itself? Is it painful on extreme gaze in any particular direction? If you have sight in the affected eye, do things look smaller or larger than normal? Tell me about the pain in your hand, as well as the tingling sensation? Is the grip weak from the pain? Where is the pain specifically located? When you say the hand tingles, describe for me where the sensation occurs and is the skin at that location numb when you touch it? Is this pain and tingling constant or does it come and go over a period of days or weeks? I'd also be interested in reviewing any lab or imaging studies that were performed that you'd care to post, but please realize that in doing so, you are relinquishing a portion of patient rights to privacy in some regard, although the forum is anonymous. It's your choice, however. I, myself, would not be so quick to suspect MS. Let's see what your responses and maybe some lab and imaging results turn up and we'll talk more. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • February 11, 2009
    • 01:48 AM
    • 0
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  • What is your serum B12 level? If you don't know, then this should be checked to rule out B12 deficiency, which can cause neurological symptoms similar to MS.Best wishesDOM
    acuann 3080 Replies
    • February 11, 2009
    • 02:56 AM
    • 0
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  • tahnk you for yoru response and I agree, that teh internet is a poor source for obtaining a diagnosis, but please realize that I have been getting worse over the last two years and am almost desparate to find some sort of answer. All of this started litterally the day my 2 year old was born. I started with a tingling, achy sensation in my left thigh, even the material from clothing hurt. I was seen by a neurologist who said it was femoral nerve damage, surgery is not for me so I learned to live with it. The pain in my eye just started out of the blue, it started with actual pain, like hot pins being stuck in my eye, my eye would tear and my vision started to go, I had very blurry vision and I was very light sensative. Shortly thereafter, I couldn't really see out of my left eye. It was like a bright light in my eye, making a blind spot. My pcp referred me to an eye doctor adn ordered an MRI. The eye doctor I was referred to, after an exam told me that I had dry eye, a very bad case, and I was having occular migraines. He treated with with collagen implants, a optical steroid, restasis and over the counter drops. I had an open MRI without contrast and it was negative. At this point my vision has declined over the past two years (age?) but the dry eye is gone and I am no longer using the restasis.The vision issue resolved itself and now it is pretty much intermittent. The pain started in my left hand, it wasn't pain in so much as it was a weakness, for instance when I tried to set the table or put away dishes, I could not hold a dinner plate in my left hand, I would drop it. It was more like a really bad ache that started at my wrist and moved up to the center of my forearm, (on the inside of the arm). That too resolved itself after a few weeks. No treatment. The pains have come and gone, there are periods of "confusion" if you will, example, I drove over to my son's home ( a few blocks away) I actually got lost and had to drive back home to get my bearings. Sometimes, I cannot verbalize what I am thinking or write down what I need to, I can see in my mind what I need to write or say but can't seem to get it out or write it down. My left knee began to hurt, like a burning, achy type of hurt, not debilitating but annoying, I finally went in to the doctor, he did blood sed rate was elevated prescibed Ibuprofen, and all was well until Thanksgiving, the pain became intense and has never went away, one more visit to the pcp about it, he gave me an injection which did not help at all and the pain is just as bad or worse actually because now it is actual pain, not annoying anymore but pain. The same with my neck, when I turn my head the pain shoots down behind my shoulder balde. The knee pain doesn't not feel muscular it feels like it's in the bone, it was staying pretty steady at teh knee the last two days the pain extends from the knee to mid calf and up to mid thigh. The tingling in my hands, pretty much is in the fingers and it is comprable to when you hand falls asleep, yet it's only my fingers, it does come and go again not debilitating, just annoying. My grip is weak according to the pcp as well as my left leg strength. I ams cheduled for more blood work in March, as he did a work up in November and wants to wait the 4 months to do more. I am scheduled for an emg left side upper and lower. I appreciate your input very much. Okay, realizing that the internet is an extremely poor source for obtaining diagnostic evaluation, please tell me more definitively what you mean by blindness in the affected eye. Does it primarily affect your central vision, your peripheral vision or both? Does it seem like you are looking though smoke or a dark lens or is vision altogether absent? Is the blindness constant or intermittent? Do you feel pain behind the eye itself? Is it painful on extreme gaze in any particular direction? If you have sight in the affected eye, do things look smaller or larger than normal? Tell me about the pain in your hand, as well as the tingling sensation? Is the grip weak from the pain? Where is the pain specifically located? When you say the hand tingles, describe for me where the sensation occurs and is the skin at that location numb when you touch it? Is this pain and tingling constant or does it come and go over a period of days or weeks? I'd also be interested in reviewing any lab or imaging studies that were performed that you'd care to post, but please realize that in doing so, you are relinquishing a portion of patient rights to privacy in some regard, although the forum is anonymous. It's your choice, however. I, myself, would not be so quick to suspect MS. Let's see what your responses and maybe some lab and imaging results turn up and we'll talk more. Best regards, J Cottle, MD
    igiveup 8 Replies
    • February 11, 2009
    • 06:05 PM
    • 0
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  • Are all your problems on the left side only or do you get tinglings etc on both sides even if uneven? Everything seems to be on the left, occasionally I get the tingling in both hands, the fingers only.
    igiveup 8 Replies
    • February 11, 2009
    • 06:07 PM
    • 0
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  • I was finally sent to pain management after a bout of debilitating pain, the Pain Management doctor sent me to a rheumatologist who took a serious of labs, the results are as follows: I am going back to the Rhuematologist in a few months, (he's on vacation), the office called me and told me the results were in and the doctor would go over everything with me when I come in. I assume that it can't be too bad if I can wait for two months. Bt i would still like to know what this all means.Does anyone know what this all means:creatine low @ .55Red Blood cell count low @ 3.67MCH high @ 33.6Absolute monocytes low @ 163cyclic citrullinated peptide ccp ab igg high @ 40Cardio Lip antibody Equivocaland Vitamin D low @ 13. Some insight wudl be appreciated. Thanks
    igiveup 8 Replies Flag this Response
  • Did you have an epidural at the time of childbirth? If so, please lookup Arachnoiditis & read symptoms. Good site is Cofwa. Has alot of info & articles by a couple Drs.
    Anonymous 42789 Replies Flag this Response
  • I was finally sent to pain management after a bout of debilitating pain, the Pain Management doctor sent me to a rheumatologist who took a serious of labs, the results are as follows: I am going back to the Rhuematologist in a few months, (he's on vacation), the office called me and told me the results were in and the doctor would go over everything with me when I come in. I assume that it can't be too bad if I can wait for two months. Bt i would still like to know what this all means. Does anyone know what this all means: creatine low @ .55Red Blood cell count low @ 3.67MCH high @ 33.6Absolute monocytes low @ 163cyclic citrullinated peptide ccp ab igg high @ 40Cardio Lip antibody Equivocaland Vitamin D low @ 13. Some insight wudl be appreciated. Thanks THEY NEED TO CHECK YOUR B12 LEVELS!! This can cause all of your symptoms. Please make sure they test this and if your B12 is under 400 they should be treating you - please visit FREDD and the B12 misdiagnosis thread. Also, your D is very low - what amount of D are they prescribing for you? You need more than the avg 400 ius. DOM
    acuann 3080 Replies Flag this Response
  • get off the sucralose, splenda and aspartame- found in diet sodaseverything really, even in gum and children's vitamins : \read labels and do not eat this stuff anymore it is poison and it sounds like you have most of the symptomsread about them on the internet check the symptoms for each one- disregard the Industry(company who made the product) advertisements on different sites that tell you they are safe - there are enough testimonials and people who will tell you on facebook groupsyoutubeand google that they were harmed by them and know because they were where you are and stopped eating them and now are better.Trial and error, they learned what was causing them these problems- now you know too!
    founddog 188 Replies Flag this Response
  • get off the sucralose, splenda and aspartame- found in diet sodaseverything really, even in gum and children's vitamins : \read labels and do not eat this stuff anymore it is poison and it sounds like you have most of the symptomsread about them on the internet check the symptoms for each one- disregard the Industry(company who made the product) advertisements on different sites that tell you they are safe - there are enough testimonials and people who will tell you on facebook groupsyoutubeand google that they were harmed by them and know because they were where you are and stopped eating them and now are better.Trial and error, they learned what was causing them these problems- now you know too!esp. if they say you have ms- these products have given such a variety of symptoms and as soon as you are off of it - you are better!
    founddog 188 Replies Flag this Response
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  • Thank you all for your responses. FREDD I am given 2000 iu per day of vitamin D, B-12 is good and I have never had an epidoral. Founddog: I do not drink soda of any sort. I seldom use real sugar and never use a sugar substitute, I rarely chew gum. The rheumotolgist has diagnosed me with RA, there is very little evidence of this on the x-rays and mri, it's only evident in labs. RA still doesn't explain all of the other symptoms, but at least I feel as though we are getting somewhere finally!!
    igiveup 8 Replies Flag this Response
  • Thank you all for your responses. FREDD I am given 2000 iu per day of vitamin D, B-12 is good and I have never had an epidoral. Founddog: I do not drink soda of any sort. I seldom use real sugar and never use a sugar substitute, I rarely chew gum. The rheumotolgist has diagnosed me with RA, there is very little evidence of this on the x-rays and mri, it's only evident in labs. RA still doesn't explain all of the other symptoms, but at least I feel as though we are getting somewhere finally!! You need to know your specific level of B12...do you know this number by chance? DOM
    acuann 3080 Replies Flag this Response
  • I had an open MRI without contrast and it was negative. Personally, to start ... I would consult with a good neurologist and get another MRI of the brain and spine, with and without contrast and a complete neurological evaluation in the office, which is typically done at the first, initial, appointment ... and further investigation ... as to the core of the symptoms & phenomena you are experiencing ... is taken from there for further direction. There is no one definitive test to confirm or deny Multiple Sclerosis; the only way a diagnosis can be established is by combining countless documented similarities of your case via comparison with those of others that have had a definitive, conclusive, and remaining diagnosis of Multiple Sclerosis with all other possiblilities being excluded. In addition, if Multiple Sclerosis is believed to be the diagnosis ... it could change pending further developments based on any potential progression(s) that may mimic other conditions ... for which you should be tested. If you are diagnosed with Multiple Sclerosis and the diagnosis is "unusual/rare/atypical," please give careful consideration to that and review to be certain that you, in your heart, truly believe that you have Multiple Sclerosis. The treatment(s) are harsh on the body and very expensive; if it would turn out that you have something other than Multiple Sclerosis, your body may be left in an immunocompromised state that could impair and/or worsen the condition you may actually have (any that are not relative to MS), or even create a new condition or disease in your body should you end up being exposed and in an immunocompromised state. I made some terrible mistakes by not keeping track of tests/results and all/other possibilities that were applicable to my case that were overlooked; physicians are very busy, it happens. It happened to me. Please use care, write down all tests and all results and start a binder ... because if this is neurological, you could be in for a very long ride. You are in my thoughts and prayers!
    neurotransmissing 145 Replies Flag this Response
  • Thank you all for your responses. FREDD I am given 2000 iu per day of vitamin D, B-12 is good and I have never had an epidoral. Founddog: I do not drink soda of any sort. I seldom use real sugar and never use a sugar substitute, I rarely chew gum. The rheumotolgist has diagnosed me with RA, there is very little evidence of this on the x-rays and mri, it's only evident in labs. RA still doesn't explain all of the other symptoms, but at least I feel as though we are getting somewhere finally!! Hi Igiveup, As the usual b12 "range" is 170-1100pg/ml or so, and all sorts of b12 responsive neurological symptoms can occur to over 1500pg/ml serum cobalamin serum level in no way rules out what might be responsive to methylb12 and/or adenosylb12. That said however, b12 responsive symptoms while possibly present do not look like the whole of the problem at all. Removing them as a complicating factor might help clarify a diagnosis via a suitable active b12 plus cofactor trial. If you had nitrous oxide with anesthesia at some point that oxidizes b12 and can be a trigerring factor for somebody on the edge. However, b12 deficiencies usually cause bilateral problems. They can't be ruled out by serum level. Some people exhibit responsive deficiency symptoms at much higher levels than the top of the range. Good luck. Explore this with Dr Cottle. While b12 won't hurt and may help, it doesn't look like your main problem to me. Who knows, maybe it will have enough effect to clarify what the problem is. Further , if you have all the CBC numbers like MCV, MCH and the others, post them as they might give some hints even if not absolutely clear.
    Freddd 3576 Replies Flag this Response
  • The rheumotolgist has diagnosed me with RA, there is very little evidence of this on the x-rays and mri, it's only evident in labs. RA still doesn't explain all of the other symptoms, but at least I feel as though we are getting somewhere finally!!I find it very odd that you were diagnosed with RA without conformation on x-rays or MRI. I've heard of seronegative RA, where the labs don't show it but the x-rays do.....but I've never heard of that happening the other way around. Strange, but I'm no doc. My labs came back suggesting RA, but it was ruled out because of the x-rays. I turned out to have SLE, among other auto-immune. I do know that a low vitamin D (mine is very low as well) can cause many of your symptoms....at least that's what my Rheumatologist says. You should begin prescription supplementation for that, but be aware it can take months for you to feel any effects. I'm glad for you that this is getting you on your way! I hope the diagnosis is correct, however.
    Harmonium 322 Replies Flag this Response
  • I had a serious of labs the labs that came back out of range are listed below. I agree I need to see a neurologist, right now I am searching for a good PCP as mine doesn't give referrals. I litterally had been seeing him for 18 months with all of these pains and symptoms and he would not send me to see a specialist. I was only able to obtain a referral through the insurance company directly. I only started to keep copies of my labs and xrays. creatine low @ .55Red Blood cell count low @ 3.67MCH high @ 33.6Absolute monocytes low @ 163cyclic citrullinated peptide ccp ab igg high @ 40Cardio Lip antibody Equivocaland Vitamin D low @ 13. And again all of your help is so much appreciated.
    igiveup 8 Replies Flag this Response
  • First of all, if you have been asking for a referral for 18 months with all of these issues and he considers you an 'enigma'........he needs to be reported to the medical board in your state. If he can't figure things out (and tells you such) and also won't refer you to someone who might be able to, I consider that malpractice. He is not treating you, but is in effect barring you from treatment. I don't know what you have and I'm not a doctor....but I might be able to help a little with the labs. Please note that because you did not give reference ranges, I'm only going on the basics of what those labs mean and their stated 'high' or 'low'. Okay?Low creatinine: Creatinine is a substance your body uses for metabolism and is excreted from your blood by your kidneys. I would take this test to mean that your kidney's function very well. Low red blood cells: may indicate anemia, depending on a host of other factors. May also be caused by your next lab:Absolute monocytes low: A monocyte is a type of white blood cell. A low reading may indicate inflammation. It can also effect your red blood cell count. cyclic citrullinated peptide ccp ab igg high: This would be the indication of RA. Remember though, not all with this high actually do have RA-- I don't. Cardio Lip antibody Equivocal: Because it's equivocal, it really doesn't mean anything. It may have been ordered to rule out some clotting issues or blood issues or even auto-immune like SLE. It can be equivical one week, high another and then low. This test changes due to your body changing. Low Vitamin D: I've been told by my Rheumie that many people are low with this. It can result in your feeling achy in your joints, low energy, even fuzzy thinking (according to the Rheumie). Since you are on 2000IU of vit D daily, this should resolve in a couple of months. I hope that helps you understand your blood work. Please understand that I am not a doc and nothing said here should be taken as ultimate truth or anything-- I'm sure that all together, these test mean something more to your docs than they do to me. I just didn't want you totally in the dark. What that blood work tells me (a non-doc) is that you have some sort of immune response going on and some inflammation-- concurrent with the diagnosis of RA, or possibly some other auto-immune. It still doesn't explain all of your symptoms. Further testing is needed. I still think you need a new PCP (possibly reporting the old one!) and a referral to a Rheumatologist and/or a Neurologist. Best wishes!
    Harmonium 322 Replies Flag this Response
  • Thank you for your interpretation of the labs, I appreciate it very much. I actually have been looking for a new PCP. Again thank you,
    igiveup 8 Replies Flag this Response
  • You are most welcome. I hope you get to the bottom of this!
    Harmonium 322 Replies Flag this Response
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