Discussions By Condition: I cannot get a diagnosis.

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Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: cbalcomgo
  • January 7, 2008
  • 02:59 PM

Okay, so I had MRI's done of my brain down to my lower back and b 4 the reaction I was getting from docs was that I have MS and possibly myelitis. Well, I went to get second opionion from different neurologist and he completly wrote me off the board and said there is absolutely nothing neurologically wrong and it is not ms. I just confused my self more because I still feel miserable and according to the info on MS, I have all the symptoms. The doc said, those symptoms r nothing like ms and he doesn't know what it is. I even saw a neuro-surgeon and he said there was some form of diesease but all he does is surgery so he couldn't help. Am I losing it? I have gotten mixed signals from doctors and now do not know what to do, all I know it has affected my life to the point of not function properly physically or mentally. Please anybody with suggestions help.

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  • Okay, so I had MRI's done of my brain down to my lower back and b 4 the reaction I was getting from docs was that I have MS and possibly myelitis. Well, I went to get second opionion from different neurologist and he completly wrote me off the board and said there is absolutely nothing neurologically wrong and it is not ms. I just confused my self more because I still feel miserable and according to the info on MS, I have all the symptoms. The doc said, those symptoms r nothing like ms and he doesn't know what it is. I even saw a neuro-surgeon and he said there was some form of diesease but all he does is surgery so he couldn't help. Am I losing it? I have gotten mixed signals from doctors and now do not know what to do, all I know it has affected my life to the point of not function properly physically or mentally. Please anybody with suggestions help. Please go to an Oriental Medical practitioner where they will be able to diagnose you according to Traditional Chinese Medicine and come up with a treatment plan that will work for you. Please look for a practitioner who is NCCAOM certified in both acupuncture and Chinese herbal medicine. This is extremely helpful for MS and MS like symptoms. Chinese herbal medicine is especially helpful, but many acupuncturists don't have this training so please make sure the one you see does. Western diagnosis of MS is tricky...you need to find a Western doc who specializes in this disease IMO. Keep in mind that Western treatments for MS are usually based on treating ("masking") symptoms. Consider Traditional Chinese Medicine as a more holistic path towards healing. Best wishesDOM
    acuann 3080 Replies
    • January 7, 2008
    • 04:54 PM
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  • Did you read up on the reply I sent you last month on this issue? The spinal punture may have done more harm than good if Arachnoiditis is what you have. It would not be of any use in diagnosing this any way. You need to have someone knowledgeable on arachnoiditis look at your MRI with contrast. Go to the cofwa site(just google cofwa & u will find their site) & read the articles on Arachnoiditis including the one from Dr Sarah Smith (who has it herself). The following is a copy of my previous reply to your previous post.Previous reply---I don't know if you checked out Adhesive Arachnoiditis I previously mentioned. It may be a long shot but here is some info from the site I recommended.You need not have all symptoms but if you have many of them it is worth looking into.Symptoms:Pain Numbness/tingling Sleep disturbance Weakness Muscle cramps/twitches/spasms Stiffness Fatigue Joint pains Balance difficulties Loss of mobility Bladder/bowel/sexual dysfunctionIncreased sweating Difficulty thinking clearly/Depression Heat intoleranceDry eyes/mouth Weight gain Heartburn/indigestion Difficulty in swallowing Headaches skin rashesOther less common problems experienced include: Tinnitus (ringing in the ears), dental problems (tooth decay may be worsened by dry mouth due to loss of the protective power of saliva), abnormalities in the menstrual cycle, eyesight problems (difficulty in focussing may be due to medication).Note: in a survey, a number of respondents had a diagnosis of an autoimmune disorder such as Lupus, Sjogren’s, Rheumatoid arthritis. There appears to be a possible link between AA and autoimmune type problems. Out of 317 survey respondents, 27 had thyroid disorders, all except one having previously undergone myelography. As myelogram dyes contain iodine, there may be a significant link between the myelogram and subsequent thyroid disease; this is currently being investigated. There are also a number of arachnoiditis patients who have also been diagnosed with ****Multiple Sclerosis***, as well as several more who have undergone investigation for MS. Those who have a diagnosis of fibromyalgia in addition to arachnoiditis are probably suffering from the condition as a secondary feature of the underlying arachnoiditis; fibromyalgic type symptoms of diffuse muscle tenderness and fatigue are common in arachnoiditis patients.
    Anonymous 42789 Replies
    • January 7, 2008
    • 10:36 PM
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  • Hi, I wish I had an answer for you but I'm in the same situation. My symptoms at first looked like MS according to my Neuro but to me, after researching it, sound like ALS or something along those lines. I'm terrified. What are your symptoms exactly? I posted elsewhere but no one has replied yet. My symptoms are: difficulty speaking, swallowing, numbness and weakness on left arm and leg, sensation of heat on the top of head, a little disorientation, running out of breath, feeling like I'm gonna pass out, can't concentrate, and I'm tired all the time, twitching, and sometimes I feel like I'm trembling. I hope we both figure out what's wrong. I understand how frustrating it feels to know something is wrong and the drs can't figure it out or tell you your too young to have this or that!!! I try to stay positive but it's hard sometimes when in the middle of your morning you lose the ability to speak well..The doc has ruled out MS and myasthenia gravis for me so far....I hope you don't have anything serious....Good luck to you! Mon
    Anonymous 42789 Replies
    • January 8, 2008
    • 03:35 AM
    • 0
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  • Please go to an Oriental Medical practitioner where they will be able to diagnose you according to Traditional Chinese Medicine and come up with a treatment plan that will work for you. Please look for a practitioner who is NCCAOM certified in both acupuncture and Chinese herbal medicine. This is extremely helpful for MS and MS like symptoms. Chinese herbal medicine is especially helpful, but many acupuncturists don't have this training so please make sure the one you see does. Western diagnosis of MS is tricky...you need to find a Western doc who specializes in this disease IMO. Keep in mind that Western treatments for MS are usually based on treating ("masking") symptoms. Consider Traditional Chinese Medicine as a more holistic path towards healing. Best wishesDOMthanks for the advice, I have already been seeing an accupunturist but they can only go so far.
    cbalcomgo 38 Replies
    • January 11, 2008
    • 05:37 PM
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  • Hi, I wish I had an answer for you but I'm in the same situation. My symptoms at first looked like MS according to my Neuro but to me, after researching it, sound like ALS or something along those lines. I'm terrified. What are your symptoms exactly? I posted elsewhere but no one has replied yet. My symptoms are: difficulty speaking, swallowing, numbness and weakness on left arm and leg, sensation of heat on the top of head, a little disorientation, running out of breath, feeling like I'm gonna pass out, can't concentrate, and I'm tired all the time, twitching, and sometimes I feel like I'm trembling. I hope we both figure out what's wrong. I understand how frustrating it feels to know something is wrong and the drs can't figure it out or tell you your too young to have this or that!!! I try to stay positive but it's hard sometimes when in the middle of your morning you lose the ability to speak well.. The doc has ruled out MS and myasthenia gravis for me so far....I hope you don't have anything serious....Good luck to you! MonThankyou for your post! I feel terrible for u. we do have very similar symptoms but the difficulty speaking. The only problem i have with that is, I seem to lose my words or what I'm trying to say. This is not like me. I have been trying to stay positive but sometimes it is hard raising a family and feeling like I'm able to take care of them. Thankfully my work has some sort of disability otherwise we would be worse off. I try not to catastrophize issues but sometimes I feel that I am going to die very soon just because it gets worse every day. I hope we can stay in touch to find out more of what is going on. Thanks again!
    cbalcomgo 38 Replies
    • January 11, 2008
    • 05:42 PM
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  • Did you read up on the reply I sent you last month on this issue? The spinal punture may have done more harm than good if Arachnoiditis is what you have. It would not be of any use in diagnosing this any way. You need to have someone knowledgeable on arachnoiditis look at your MRI with contrast. Go to the cofwa site(just google cofwa & u will find their site) & read the articles on Arachnoiditis including the one from Dr Sarah Smith (who has it herself). The following is a copy of my previous reply to your previous post. Previous reply---I don't know if you checked out Adhesive Arachnoiditis I previously mentioned. It may be a long shot but here is some info from the site I recommended.You need not have all symptoms but if you have many of them it is worth looking into. Symptoms:Pain Numbness/tingling Sleep disturbance Weakness Muscle cramps/twitches/spasms Stiffness Fatigue Joint pains Balance difficulties Loss of mobility Bladder/bowel/sexual dysfunctionIncreased sweating Difficulty thinking clearly/Depression Heat intoleranceDry eyes/mouth Weight gain Heartburn/indigestion Difficulty in swallowing Headaches skin rashes Other less common problems experienced include: Tinnitus (ringing in the ears), dental problems (tooth decay may be worsened by dry mouth due to loss of the protective power of saliva), abnormalities in the menstrual cycle, eyesight problems (difficulty in focussing may be due to medication). Note: in a survey, a number of respondents had a diagnosis of an autoimmune disorder such as Lupus, Sjogren’s, Rheumatoid arthritis. There appears to be a possible link between AA and autoimmune type problems. Out of 317 survey respondents, 27 had thyroid disorders, all except one having previously undergone myelography. As myelogram dyes contain iodine, there may be a significant link between the myelogram and subsequent thyroid disease; this is currently being investigated. There are also a number of arachnoiditis patients who have also been diagnosed with ****Multiple Sclerosis***, as well as several more who have undergone investigation for MS. Those who have a diagnosis of fibromyalgia in addition to arachnoiditis are probably suffering from the condition as a secondary feature of the underlying arachnoiditis; fibromyalgic type symptoms of diffuse muscle tenderness and fatigue are common in arachnoiditis patients.yes I did read up on this and the docs felt it wasn't in my best interest right now to have a spinal tap. The problem is, that there r so many illnesses that can cause these symptoms and I just feel at a loss right now. My thyroid always looks good so it can't be that. fibromyalgia is one that they r kinda throwing it on right now because the muscle weakness( or flu like sensations ). I appreaciate u staying up with me on this.
    cbalcomgo 38 Replies
    • January 11, 2008
    • 05:46 PM
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  • have you been tested for lymes disease and heavy metals?
    Anonymous 42789 Replies
    • January 11, 2008
    • 06:25 PM
    • 0
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  • thanks for the advice, I have already been seeing an accupunturist but they can only go so far. Two questions:1. Is your acupuncturist also NCCAOM certified in Chinese Herbology and do they prescribe herbs for your condition? 2. Have you been tested for Lyme? Igenex and Bowen labs are the only reliable tests from what I have heard. Undiagnosed Lyme can cause an assortment of symptoms, please rule this out. Best wishesDOM
    acuann 3080 Replies
    • January 11, 2008
    • 07:14 PM
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  • It is best NOT to get spinal tap if you may have this. Maybe have someone NEW look at your MRI with contrast. This is the best & maybe only way to diagnose. They must see what the nerves in spine are doing. If they mention scarring in spinal canal or they see nerves clumped up at some location or if dural sac appears empty it is most likely arachnoiditis. Some Drs will not SAY the "A" word. It is not a good thing to have---I know personally--but it gives you an answer. I had to search years to get a diagnosis meanwhile being in excruciating pain, not getting around well & working 2 jobs to keep a roof over my head. Popping hydrocodone every 6 hrs to this day just to keep going. Pain management is key. I know it is not something you or Drs may want to believe you have. My Dr originally threw the papers I gave her from internet in my face & would not even listen to me---yet she did not have any answers after MRIs & EMGs & several circulation tests. I did alot of searching & had to find another DR. Good luck to you
    Anonymous 42789 Replies
    • January 11, 2008
    • 09:17 PM
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  • have you been tested for lymes disease and heavy metals?No I haven't been tested for lyme disease and curious why everyone points this out but docs don't say anything about it. I did look it up and some symptoms r similar but most r different.
    cbalcomgo 38 Replies
    • January 12, 2008
    • 02:31 AM
    • 0
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  • Two questions:1. Is your acupuncturist also NCCAOM certified in Chinese Herbology and do they prescribe herbs for your condition? 2. Have you been tested for Lyme? Igenex and Bowen labs are the only reliable tests from what I have heard. Undiagnosed Lyme can cause an assortment of symptoms, please rule this out. Best wishesDOMYes she is but a lot of the herbal products make me sick. What do u do in a case like this. Also, so very expensive some and insurance will not pay for!
    cbalcomgo 38 Replies
    • January 12, 2008
    • 02:32 AM
    • 0
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  • It is best NOT to get spinal tap if you may have this. Maybe have someone NEW look at your MRI with contrast. This is the best & maybe only way to diagnose. They must see what the nerves in spine are doing. If they mention scarring in spinal canal or they see nerves clumped up at some location or if dural sac appears empty it is most likely arachnoiditis. Some Drs will not SAY the "A" word. It is not a good thing to have---I know personally--but it gives you an answer. I had to search years to get a diagnosis meanwhile being in excruciating pain, not getting around well & working 2 jobs to keep a roof over my head. Popping hydrocodone every 6 hrs to this day just to keep going. Pain management is key. I know it is not something you or Drs may want to believe you have. My Dr originally threw the papers I gave her from internet in my face & would not even listen to me---yet she did not have any answers after MRIs & EMGs & several circulation tests. I did alot of searching & had to find another DR. Good luck to youI'm very confused, why would they not say this to me? Everytime the docs used to pop that psychsomatic disorder in my face, I wanted to pop them in the nose! I said to my doc why don't u live in my body one day and then lets talk! However, since he saw my MRI he knew there was something up. I'm still dissappointed though, they say lets see how things r in 5 months. I am currently taking pain meds and it does give a little meaning to life again but most times i'm still so weak I can't do much. What dose of hydrocodone do u take and how many a day? just curious how u manage. I take 7.5/325 but i have been taking up to 6 a day and it scares me. I don't want to be a druggy but i don't want to suffer either. They did try me on a longer acting med called ms-contin 15mg put me in the hospital for 2 days. anyway thanks
    cbalcomgo 38 Replies
    • January 12, 2008
    • 02:39 AM
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  • I do not know why Drs won't fess up to certain medical problems. From my research & being a member of the COFWA support group I have learned a great deal. Many Drs feel this is a rare disorder but this just isn't so. I could get off on another lecture about invasive spinal procedures such as epidurals women are having at childbirth. Drs do not want to admit it but as you may have found out from the COFWA site, this procedure has & does many times give that new mother a LIFETIME of pain to remember it by. Does anyone know how many times a new Dr has to "practice" this procedure (on a human)to get it right? Just how many of those women will never be told that along with a baby they welcomed a lifelong sentence of pain. Anyway---possibly if any of the Drs you are seeing have done anything invasive to your spine, that may be a reason they will not put a name to it. Many times even after back surgery they just call it "failed back surgery syndrome". There is also the need to protect their fellow Drs. Called CYA if ya know what I mean. Of course you cannot sue them because we so willingly sign those consent forms when they tell us there is such a very small chance of complications. It is a REAL & disabling thing & is now recognized as such to receive disability if it hinders you to the point of no suitable employment. You could also get info by becoming a COFWA member as I did. You do not need to be diagnosed to join. In fact many members have never had a formal diagnosis of "A" written in their charts. Many Drs have very creative ways of labeling it. Everyone there has it & will gladly answer your questions. There are many "pain cocktails" to deal with Arachnoiditis. It may be trial & error. Be leary of pain management places as alot of them will try to give you epidural injections as a first attempt to deal with the pain. If they are knowledgeable on "A" at all they should know this causes Arachnoiditis & if you already have it , it may very well make it worse. Some have success with implanted pain pumps. I am taking the same dose as you every 6 hrs. I had been on hydrocodone 10/500 tylenol but after 3 years of that I have put my liver in jeopardy. It did work better though. To get the proper relief you must keep a regular dosing schedule. You might feel better after your body gets used to it.
    Anonymous 42789 Replies
    • January 12, 2008
    • 06:34 AM
    • 0
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  • I don't know if this will help anyone, but i went 8 years with an undiagnosed neurological condition. I saw over eight neurologists. My symptoms included fatigue, headaches, balance and coordination problems, speech and memory problems, etc...Although i was worked up for MS, hereditary ataxia, myelopathy, spastic paraparesis, west nile virus, and many other things, I encountered many, MANY neurologists and general practitioners who told me it was depression or psychosomatic.Eventually I was diagnosed with Hashimoto's Encephalopathy, a rare complication of autoimmune thyroiditis. Though my thyroid hormone levels had been checked multiple, multiple times, like so many HE patients, they were always normal. But my thyroid antibodies were quite elevated and a subsequent ultrasound of my gland showed that it was full of tiny nodules from the autoimmune destruction. My illness gets better with stroids and thyroid replacement.So I guess my take home point is not to give up. Please do not listen to doctors who tell you it's stress or blow off your symptoms. Keep searching until you find someone who can figure it out. It may take several years but know that you are not alone. While you may feel alone when you are speaking to the doctor individually, remember that being blown off is very common, and unfortuanately has happened to a lot of us. It's not you, it's them.
    Anonymous 42789 Replies
    • January 13, 2008
    • 04:04 AM
    • 0
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  • I don't know if this will help anyone, but i went 8 years with an undiagnosed neurological condition. I saw over eight neurologists. My symptoms included fatigue, headaches, balance and coordination problems, speech and memory problems, etc... Although i was worked up for MS, hereditary ataxia, myelopathy, spastic paraparesis, west nile virus, and many other things, I encountered many, MANY neurologists and general practitioners who told me it was depression or psychosomatic. Eventually I was diagnosed with Hashimoto's Encephalopathy, a rare complication of autoimmune thyroiditis. Though my thyroid hormone levels had been checked multiple, multiple times, like so many HE patients, they were always normal. But my thyroid antibodies were quite elevated and a subsequent ultrasound of my gland showed that it was full of tiny nodules from the autoimmune destruction. My illness gets better with stroids and thyroid replacement. So I guess my take home point is not to give up. Please do not listen to doctors who tell you it's stress or blow off your symptoms. Keep searching until you find someone who can figure it out. It may take several years but know that you are not alone. While you may feel alone when you are speaking to the doctor individually, remember that being blown off is very common, and unfortuanately has happened to a lot of us. It's not you, it's them.Thankyou so much for your support! I realize I'm not the only one but sometimes we get caught up in what is going on with ourselves. One more question, so if thyroid comes back normal ask for ultrasound of the gland? That is really unique to me, thanks for your time!
    cbalcomgo 38 Replies
    • January 14, 2008
    • 01:31 AM
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  • Hmm.. I 'm not sure if a thyroid ultrasound will help you or not. I mentioned mine to show that I walked around for a long time being told it was "okay", when it wasn't (the nodules did not show up overnight). If you are worried about your thyroid (or have googled HE to see if it fits you at all), you might want to have the antibodies checked first, but this can be expensive and doctors don't usually check them until your hormones are off first (this is why I went undiagnosed for so long- my hormones were always okay). I think the antibody tests might be more sensitive than an ultrasound...Whichever tests you do, please do not give up trying to find your answer. It might not be your thyroid, but you need to keep searching for answers until the problem is identified and the organ or organs that are not working okay is/are found.The big mistake I made was to buy into my doctors' explanations that my symptoms were from depression/ psychosomatic/ a troubled childhood, etc... i.e. that I was not ill. bought into this for a few years- until I found a doctor who told me not to believe the other doctors and search for an answer.You are the only one in your body, and you know when something is not right. The doctor's job should be to help you find the problem, not dismiss your symptoms. If you encounter a dismissive doctor, run, run run!!!!I am rooting for you and hope you find your answer soon!
    Anonymous 42789 Replies
    • January 15, 2008
    • 01:46 AM
    • 0
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  • Hmm.. I 'm not sure if a thyroid ultrasound will help you or not. I mentioned mine to show that I walked around for a long time being told it was "okay", when it wasn't (the nodules did not show up overnight). If you are worried about your thyroid (or have googled HE to see if it fits you at all), you might want to have the antibodies checked first, but this can be expensive and doctors don't usually check them until your hormones are off first (this is why I went undiagnosed for so long- my hormones were always okay). I think the antibody tests might be more sensitive than an ultrasound...Whichever tests you do, please do not give up trying to find your answer. It might not be your thyroid, but you need to keep searching for answers until the problem is identified and the organ or organs that are not working okay is/are found.The big mistake I made was to buy into my doctors' explanations that my symptoms were from depression/ psychosomatic/ a troubled childhood, etc... i.e. that I was not ill. bought into this for a few years- until I found a doctor who told me not to believe the other doctors and search for an answer.You are the only one in your body, and you know when something is not right. The doctor's job should be to help you find the problem, not dismiss your symptoms. If you encounter a dismissive doctor, run, run run!!!!I am rooting for you and hope you find your answer soon!Hey, u r great for all this info! you said something I found quite interesting in this. You were talking about hormones and they didn't do anything because they were always fine. well, being 28 and having blood test my testosterone was extremely low. He started me on therapy and it did help with the sexual part some but overall mood was worse and even felt more fatigue. Strange u might be saying, because that is what i said. Anyway, do u think this could be linked between the thyroid nodule? thanks again! P.S- I won't give up!
    cbalcomgo 38 Replies
    • January 15, 2008
    • 04:59 AM
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  • Please go to an Oriental Medical practitioner where they will be able to diagnose you according to Traditional Chinese Medicine and come up with a treatment plan that will work for you. Please look for a practitioner who is NCCAOM certified in both acupuncture and Chinese herbal medicine. This is extremely helpful for MS and MS like symptoms. Chinese herbal medicine is especially helpful, but many acupuncturists don't have this training so please make sure the one you see does. Western diagnosis of MS is tricky...you need to find a Western doc who specializes in this disease IMO. Keep in mind that Western treatments for MS are usually based on treating ("masking") symptoms. Consider Traditional Chinese Medicine as a more holistic path towards healing. Best wishesDOMI forgot to ask her if she was nccaom certified. However, I know she has her master in science and some kind of degree in accupuncture, is this not the samething? It did help for the one day but she said I would need to come in twice a week for the next few months to benifit from accupuncture. The problem is, she is so booked and u have to make all the apts a month in advance. I can't do this based on schedule issues. Basically there is no consistancy and there are only a few accupuncturist in our area! You seem to be very responsive to people on here and sound like u really take your time to look these differant situations up. Thanks for that!
    cbalcomgo 38 Replies
    • January 21, 2008
    • 02:11 PM
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  • No I haven't been tested for lyme disease and curious why everyone points this out but docs don't say anything about it. I did look it up and some symptoms r similar but most r different.I have read quite a few "horror stories" relating to this. The problems with Lyme are it can be difficult to diagnose and causes a wide range of symptoms which come and go almost as they please!It may be worth asking your doctor for ELISA and Western Blot tests.
    Adam2953 28 Replies
    • January 21, 2008
    • 10:45 PM
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