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Negative Test Results, Symptoms Worse
I'm new on here. I have a good neurologist and a good psychiatrist. I've had the evoked potentials, several MRIs (found out in the process that I am one of the extremely few who has a life-threatening reaction to gadolinium, which doesn't help), lumbar puncture, and lots of blood work to rule out B12 deficiency, sarcoidosis, etc. I also have blurred vision (left eye), dizziness, increasing difficulty walking, tingling and burning in my hands and feet, some dysarthria (R's, V's, and W's...??), occasional muscle spasms, some loss of mental function (trouble with planning, short-term memory, and sometimes, reasoning), fatigue (not "sleepy" tiredness, but muscle fatigue, mostly in my legs), electric-shock feelings every now and then in my lower (yes, lower) back, occasional trouble swallowing when tired, occasional loss of voice volume when tired -- and symptoms get worse when I am hot or annoyed. Even my neurologist, who is an MS specialist, says that MS is the best explanation. BUT ALL OF MY TESTS HAVE BEEN NEGATIVE. We have ruled out drug interactions, drug side effects, Lyme disease by Western blot and some other means... really REALLY working to rule out everything. On the VEP, my left eye was 2 SD slower than my right eye...but both were well faster than average (and unfortunately, I'm one of those people who is above average on everything, so "within normal limits" may not mean much... I don't know).
Right now, getting more tests that are negative is NOT good news. One of my MRI scans looked like it had a slight signal abnormality, apparent on several views, axial and coronal... (I am a neuropsychology intern, so I know the MRI basics, but not quite as much as a neurologist would... you know what they say about "a little knowledge"...) but it wasn't a really bright hyperintensity...
What do I do? Try again? My neuro wants me to get a second opinion from someone even higher "up the food chain" than he is, but he's pretty far up.
I'm not making this up. It is not my imagination. I can hardly walk AND MY TESTS ARE NEGATIVE. NOT JUST FOR MS. I've heard that it's possible to have MS with negative test results for a while, early on in the course of it. I'd love it if I really had nothing. But I am getting worse. I've just had another exacerbation. It's a clear exacerbation, my second, clearly different symptoms (maybe linked to that faint enhancing lesion that I thought I saw on the MRI?)?????
I just want to know, and want to know what to do now. I'm going to get the second opinion. I need to know that I am not crazy, that it is not all in my head, that it is possible for all the tests to "miss" (or for me to see something the radiologist didn't)... ANYTHING. Please. Whatever I have, it is progressing pretty fast since six months ago and certainly being allergic to gadolinium contrast is not a helpful thing. I'd be willing to risk another anaphylactic reaction to know what is going on. WHAT DO I DO? WHAT IS WRONG WITH ME? CANT ANYONE RELATE? AM I ALONE IN THIS? I don't know what to do. I just don't know what to do. We have ruled out EVERYTHING that can be ruled out.
This discussion is related to MS symptoms, but negative tests. Which way to go?.
Right now, getting more tests that are negative is NOT good news. One of my MRI scans looked like it had a slight signal abnormality, apparent on several views, axial and coronal... (I am a neuropsychology intern, so I know the MRI basics, but not quite as much as a neurologist would... you know what they say about "a little knowledge"...) but it wasn't a really bright hyperintensity...
What do I do? Try again? My neuro wants me to get a second opinion from someone even higher "up the food chain" than he is, but he's pretty far up.
I'm not making this up. It is not my imagination. I can hardly walk AND MY TESTS ARE NEGATIVE. NOT JUST FOR MS. I've heard that it's possible to have MS with negative test results for a while, early on in the course of it. I'd love it if I really had nothing. But I am getting worse. I've just had another exacerbation. It's a clear exacerbation, my second, clearly different symptoms (maybe linked to that faint enhancing lesion that I thought I saw on the MRI?)?????
I just want to know, and want to know what to do now. I'm going to get the second opinion. I need to know that I am not crazy, that it is not all in my head, that it is possible for all the tests to "miss" (or for me to see something the radiologist didn't)... ANYTHING. Please. Whatever I have, it is progressing pretty fast since six months ago and certainly being allergic to gadolinium contrast is not a helpful thing. I'd be willing to risk another anaphylactic reaction to know what is going on. WHAT DO I DO? WHAT IS WRONG WITH ME? CANT ANYONE RELATE? AM I ALONE IN THIS? I don't know what to do. I just don't know what to do. We have ruled out EVERYTHING that can be ruled out.
This discussion is related to MS symptoms, but negative tests. Which way to go?.
I have been having many of the same symptoms as you I am 31 years old and after neg test and going throgh family medical hjstory I found my Aunt who experiensed all of what you and I have and it was ruled out to be Myasthenia gravis disease get tested Im positive by your symptoms this is what you have going on.
Your not alone in this. I am going threw the same thing right now. All my test are negative as well. I just saw my Doctor today and he wants to treat me for MS. This doctor is the third Nero I have seen with the same answer. Just like you I want more snswers in all of this. I wish you the best.
1 Comments
Myasthenia gravis
I am so glad I found this forum. I can relate to what you're going through. In 2004 I had an episode which made me lose my vision. My ex-husband rushed me to the hospital and they did all types of test. I was so scared because I didn't know what was going on. When I got the results from the MRI, my doctor said I have optic neuritis but I didn't have any abnormalities (no lesions) in my brain. They also did a lumbar puncture on me and that came back negative, no protein were found. I was happy but at the same time sad because I had lost my vision. After I got out of the hospital, they prescribe me prednisone which brought back a partial of my vision. I know this symptom is the first sign of MS and the doctors diagnose me with possible MS. They didn't prescribe any meds for the MS because my episode was not advance enough. Now years went by and I didn't have any symptoms until the beginning of 2008. The same ones you explain on your post are the same one I'm having. I went to a new doctor(because I move to another state) and they did all those test all over again. When I got the results, all test were negative. This is frustrating because I know I'm not making this up. The doctor think I am making this up. But how can I if I already had the first episode in 2004. I have proof and the damage nerve shows up in the test. Isn't that enough proof. I wish the doctors were in our shoes so they can see what it's like to live in these condition on a daily basis. Well, I'm not going to stand for this and neither should you. Don't give up and if you have to change doctors, then by all means do it. I really hope you get the help that you deserve. I wish you lots of luck and remember, don't give up.
I sympathize with you I am two years and in the same boat, except the neuro's have given up on me and despite having clonus and brisk reflexes the 6 neuro's I have seen have concurred this is a psycological problem and hung me out to dry. My family doctor is the only one who believes me because he has seen my progression. The neuros want me to see a psyciatrist who deals with psycosomatic illness. They explain away all of my findings, they say my muscle atrophy is hands ands arms is from lack of use I am 32 years old, even explained the atrophy in my face is probably my face looking different from depression, the last neuro saw the twitching in through my cheek but said it was only anxiety. This is bull****. I can no longer walk very long and if I over do it I pay for days. I have not been able to work for two years but can't get disability because no one knows what I have. I have now been dimissed by all of the prominent neuros as a nutjob so I am at my wits end. My DR. says he feels I have a rare neurological condition that these neuros are not recognizing. They keep saying my neurological exam is normal but this is because when they find clonus or brisk reflexes they blame it on either depression or anxiety. After the birth of my son I could not even lift him or change his diapers I was so weak, I could not even squeeze the neuros hand or resist him pushing on my arm, he could not explain it so he said post partum depression even though I had no symptoms of this. Your worst nightmare has come true for me and I don't know where to turn. Here in the area I live it seems all the neuros are a big boys club and once you have been seen and labeled good luck at getting help. I was seen by a physiotherapist over a year ago and she said I have uneven muscle wasting and atrophy but the neuros have an answer for everything and blame it on me for lack of use. I have even went so far to go through extensive psychological testing which was all normal except showed situational depression which is very normal for a sick person. I'll never forget the day I was so weak when my son was born I could not lift him or change his diaper and they came in and said there was nothing wrong with me and it was all in my head. I feel for all of you. This is the fight of my life and I will not be labeled and my fight to get to the bottom will go on. I have to for me, for my family. I am just so flabbergasted that despite my physical findings because I am not a typical text book case I have had to go through this. I guess these neurologists are only as good as there text books and if you don't fit in there box for certain illnesses you are nuts.
Thanks --
right now it's just so important for people to believe me. Hilfy -- I feel for you, so much. Wow. Reminds me of how I leave my cane in the car because I can manage to fake it at work where there are handrails and anough places to sit that no one has to see how bad some days are... and then other days aren't so bad..but today, I was up in the neurology library trying to see if there was any way this could be psychological, learning how to distinguish between the two kinds of conditions, trying things like "distracting myself" and what they say could work on a person with a psychosomatic condtion...of course I was doing it to myself but it didn't work... didn't think so, but it was worth a try... but I know it's not all in my mind. All in my brain, perhaps, but not all in my mind. And yet, there is a part of me that is terrified of my symptoms going away, and just want some great big huge unquestionable exacerbation that conclusively gives answers. I do'nt want MS. I don't want anything. I don't want whetever it is that I've got. But you are so right, it is not "good news" to hear "negative tests"... (although some of the horrific lethal ones I'm very glad to hear are negative, obviously). All we know is I'm very mildly hyperthyroid and aside from that, everything else is normal. Which it shouldn't be. My blood tests are all normal, and I have chronic gum disease and am waiting to have periodontal surgery. There should be some evidence of some sort of chronic infection somewhere, goodness knows I have had it for two years even though the antibiotics take pretty good care of it...
I never cry, and I've been able to mostly laugh and make jokes quite a lot. But today, all of this hit me as a horrible nightmare: that this proces is going on with me, and it's real, and it's progressing, and every test says that I am perfectly fine, except that I am not. My knees keep halfways buckling out from under me. Whatever. Today I can't stop crying. Yesterday, the idea of a second opinion was marginally tolerable. Today, the thought of having to meet a new doctor and go through this all again...I feel like I'll be convincing someone of my sanity more than anything, and to me that feels so humiliating. I'm so afraid of the day that they all just give up and tell me that it's all in my head. I'm seriously considering waiting until I get sicker before I try again. That's what I did this time. I'd had symptoms for months and a dismissive neurologist. I waited until I was dizzy and had the burning in my hands and feet and conclusively had the blurred vision for over six months, and waited until the fatigue was a daily thing and not just something that I couldn't be sure of. I thought there were enough symptoms for something to show up on the tests. I got a wonderful doctor who listened to me and who ordered the right tests this time, but still nothing. So I'll let myself get worse, and then I'll try again. If I get bad enough, then maybe I'll be worth a case conference. Right now, I'm afraid they'll just say it's in my head and dismiss me, and I'm too exhausted to stand that sort of humiliation. As long as I know I am not alone and not crazy, I can deal with not knowing for a little while longer.
Psy
right now it's just so important for people to believe me. Hilfy -- I feel for you, so much. Wow. Reminds me of how I leave my cane in the car because I can manage to fake it at work where there are handrails and anough places to sit that no one has to see how bad some days are... and then other days aren't so bad..but today, I was up in the neurology library trying to see if there was any way this could be psychological, learning how to distinguish between the two kinds of conditions, trying things like "distracting myself" and what they say could work on a person with a psychosomatic condtion...of course I was doing it to myself but it didn't work... didn't think so, but it was worth a try... but I know it's not all in my mind. All in my brain, perhaps, but not all in my mind. And yet, there is a part of me that is terrified of my symptoms going away, and just want some great big huge unquestionable exacerbation that conclusively gives answers. I do'nt want MS. I don't want anything. I don't want whetever it is that I've got. But you are so right, it is not "good news" to hear "negative tests"... (although some of the horrific lethal ones I'm very glad to hear are negative, obviously). All we know is I'm very mildly hyperthyroid and aside from that, everything else is normal. Which it shouldn't be. My blood tests are all normal, and I have chronic gum disease and am waiting to have periodontal surgery. There should be some evidence of some sort of chronic infection somewhere, goodness knows I have had it for two years even though the antibiotics take pretty good care of it...
I never cry, and I've been able to mostly laugh and make jokes quite a lot. But today, all of this hit me as a horrible nightmare: that this proces is going on with me, and it's real, and it's progressing, and every test says that I am perfectly fine, except that I am not. My knees keep halfways buckling out from under me. Whatever. Today I can't stop crying. Yesterday, the idea of a second opinion was marginally tolerable. Today, the thought of having to meet a new doctor and go through this all again...I feel like I'll be convincing someone of my sanity more than anything, and to me that feels so humiliating. I'm so afraid of the day that they all just give up and tell me that it's all in my head. I'm seriously considering waiting until I get sicker before I try again. That's what I did this time. I'd had symptoms for months and a dismissive neurologist. I waited until I was dizzy and had the burning in my hands and feet and conclusively had the blurred vision for over six months, and waited until the fatigue was a daily thing and not just something that I couldn't be sure of. I thought there were enough symptoms for something to show up on the tests. I got a wonderful doctor who listened to me and who ordered the right tests this time, but still nothing. So I'll let myself get worse, and then I'll try again. If I get bad enough, then maybe I'll be worth a case conference. Right now, I'm afraid they'll just say it's in my head and dismiss me, and I'm too exhausted to stand that sort of humiliation. As long as I know I am not alone and not crazy, I can deal with not knowing for a little while longer.
Psy
i read what you wrote....i actually wept. i don't have answers but i sympathize. please read my story:
For over two years i have been going to my family doc. i kept telling him...my spine (not back) hurts and i have gone stupid. he did a few blood test (i am not familiar with medicine or anything ~ i just do what they say) all negative. so when he could not find anything...he said it was all in my head. i am a happy person ~despite all this. he said i was depressed. what? but i am happy i just hurt. i hate going to doctors. i avoid it at all cost. so when my pain got worse. fatigue ~like you would not believe...okay. maybe you would ~. i went back. more of "you are crazy" and "all your test are negative" so i began to doubt my own sanity. when it got worse...i sucked it up...went to work anyway. but soon i couldn't suck it up any more. i was getting lost taking my son to school. losing my car in the parking lot often. forgetting words. calling my son "mom". that brings us to today. in March i began to stutter. really bad. and i couldn't walk. is this in my head? am i that crazy i can make myself do this and not know i am? my m.d said it would be a waste of my time to see a neurologist. so i didn't. but fear took me to see my endo. (i have Hashimoto's) i thought maybe something to do with that. he was shocked. i was gaunt, walking oddly and couldn't formulate thoughts and my stutter was bad. every test negative...he sent me to neurologist....still all tests negative. trust me i don't want a disease....but when they call and say "good news! all test are negative!" i want to come through the phone and choke them. i am scared. i am getting worse. i am questioning my sanity. i lost my job. all i can do is lay around because sitting hurts so bad. standing hurts. walking hurts. my thoughts are jumbled. i park in handicap for God's sake! when i do get out...i am embarrassed. people actaully stare. why would this all be in my head? some of my brothers actaully implied i am doing it for attention. what? why? i don't want this kind of attention! i use to jog..i use to work...i use to~use to~ use to...but now i can't...why would i do this to myself? i am sorry. i am venting....but when i read your "problems" .....to know that someone else is going through something similar....maybe i am not crazy. my neurologist doesn't think so....but he can't find a bloody thing! "all test are negative" dear God in Heaven! find something and start treating me! i don't want to "use to" i want to "do"
I sympathize ~ for what it is worth.
Hilfy
For over two years i have been going to my family doc. i kept telling him...my spine (not back) hurts and i have gone stupid. he did a few blood test (i am not familiar with medicine or anything ~ i just do what they say) all negative. so when he could not find anything...he said it was all in my head. i am a happy person ~despite all this. he said i was depressed. what? but i am happy i just hurt. i hate going to doctors. i avoid it at all cost. so when my pain got worse. fatigue ~like you would not believe...okay. maybe you would ~. i went back. more of "you are crazy" and "all your test are negative" so i began to doubt my own sanity. when it got worse...i sucked it up...went to work anyway. but soon i couldn't suck it up any more. i was getting lost taking my son to school. losing my car in the parking lot often. forgetting words. calling my son "mom". that brings us to today. in March i began to stutter. really bad. and i couldn't walk. is this in my head? am i that crazy i can make myself do this and not know i am? my m.d said it would be a waste of my time to see a neurologist. so i didn't. but fear took me to see my endo. (i have Hashimoto's) i thought maybe something to do with that. he was shocked. i was gaunt, walking oddly and couldn't formulate thoughts and my stutter was bad. every test negative...he sent me to neurologist....still all tests negative. trust me i don't want a disease....but when they call and say "good news! all test are negative!" i want to come through the phone and choke them. i am scared. i am getting worse. i am questioning my sanity. i lost my job. all i can do is lay around because sitting hurts so bad. standing hurts. walking hurts. my thoughts are jumbled. i park in handicap for God's sake! when i do get out...i am embarrassed. people actaully stare. why would this all be in my head? some of my brothers actaully implied i am doing it for attention. what? why? i don't want this kind of attention! i use to jog..i use to work...i use to~use to~ use to...but now i can't...why would i do this to myself? i am sorry. i am venting....but when i read your "problems" .....to know that someone else is going through something similar....maybe i am not crazy. my neurologist doesn't think so....but he can't find a bloody thing! "all test are negative" dear God in Heaven! find something and start treating me! i don't want to "use to" i want to "do"
I sympathize ~ for what it is worth.
Hilfy
You are connected to the medical system -- so you may be surprised to hear that what I have to say is not so well known in the US. I had the same symptoms and it took me a long time to figure out. You may have electro sensitivity -- you will see a lot of people in these forums from ear,nose and throat, migraines, and neurology complaining of very similar symptoms that don't seem to add up. Check out electrosensitivity.org or Canada's WEEP iniative.
It comes from overexposure (over many years) to non-ionizing radiation from cell phones, wireless modems (wifi), cordless phones or any work in high electro-magnetic fields (high voltage equipment). Notice that you feel worse when you are exposed to electrical equipment including computer screens (especially the old kind -- thin screens have less radation). You have to be careful about exposure --
My symptoms include: headaches, dizzyness, ear pain, sleep problems (light sleeping even if for many hours), nausea/acid reflux, reddened facial skin (actually comes from a "tanning" from my computer screens), foggy headed feeling, anxiety, heart palipatation, tinnitus.
It is a relatively new diagnosis so I can't blame anyone -- but it is fairly serious. What bothers me is that i went to many doctors and they all said I was in perfect health and suggested that it might be psychosomatic. Luckily I found a yahoo group with thousands of others who gave me advice and I am slowly getting my life back.
Best of luck and feel better. Let me know if i can help any further.
Carol761
It comes from overexposure (over many years) to non-ionizing radiation from cell phones, wireless modems (wifi), cordless phones or any work in high electro-magnetic fields (high voltage equipment). Notice that you feel worse when you are exposed to electrical equipment including computer screens (especially the old kind -- thin screens have less radation). You have to be careful about exposure --
My symptoms include: headaches, dizzyness, ear pain, sleep problems (light sleeping even if for many hours), nausea/acid reflux, reddened facial skin (actually comes from a "tanning" from my computer screens), foggy headed feeling, anxiety, heart palipatation, tinnitus.
It is a relatively new diagnosis so I can't blame anyone -- but it is fairly serious. What bothers me is that i went to many doctors and they all said I was in perfect health and suggested that it might be psychosomatic. Luckily I found a yahoo group with thousands of others who gave me advice and I am slowly getting my life back.
Best of luck and feel better. Let me know if i can help any further.
Carol761
I am alone with you. Same story, same results over multiple tests. Treatment includes baclofen, keppra, cymbalta, lamictal: good for walking with stiffness and pain in muscles. clonopin. No answers either, just myoclonus disorder. I have atrophy of extremities though in addition to your issues. Do have 3 small hyperintense "subcortical lesions of non-significance". Say are migraines, but have no h/a. So, you and I are in the same boat. do have fasiculations as well all over but lesser degree with meds. Having cognitive disturbance lately also. STM mostly, concentrating at work, slowed thought processes.. Let me know what happens, it would be interesting to know....While there are skeptics out there, I know my body and believe it to be a virus not yet located as an agent causing these symptoms.
Hi there.
I'm sorry to learn that you are experiencing all of these. I believe that your situation may indeed be very hard to diagnose and may require a lot of patience. For complex conditions such as yours, I suggest that you discuss with your doctors regarding presenting your case in a hospital conference, where doctors from the different subspecialties attend and discuss complicated matters. This way, the inputs of several doctors can be noted and hopefully come up with a diagnostic and management plan. Hospitals usually hold these kinds of conferences regularly. I pray that you and your doctors can get to the bottom of this soon.
Regards and God bless.
I'm sorry to learn that you are experiencing all of these. I believe that your situation may indeed be very hard to diagnose and may require a lot of patience. For complex conditions such as yours, I suggest that you discuss with your doctors regarding presenting your case in a hospital conference, where doctors from the different subspecialties attend and discuss complicated matters. This way, the inputs of several doctors can be noted and hopefully come up with a diagnostic and management plan. Hospitals usually hold these kinds of conferences regularly. I pray that you and your doctors can get to the bottom of this soon.
Regards and God bless.
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