Aa
Introduce yourself here.
Hi everyone you can introduce yourself on this thread.
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
Hello and welcome to the forum. This is a great place to find support! Everyone here is wonderful!
I have felt what you are describing a few times in the past. From what it sounds like, you are describing nerve pain. This may sound really simple, but have you ever been screened for fibromyalgia? I was recently diagnosed with this as well, and what it basically is is overactive nerves, which sounds a little like you describe.
From what I have learned, people with fibro are more prone to other autoimmune diseases, as well. Have you ever been tested for any of the other autoimmune or neurological diseases?
If you feel comfortable, start a new thread by clicking on the add a post button and tell us a little more. Some of the others here may not see this post, as it is at the end of a really long thread. I, myself, don't always see the posts on this thread.
Hang in there and hope to hear from you soon!
Sarah
I have felt what you are describing a few times in the past. From what it sounds like, you are describing nerve pain. This may sound really simple, but have you ever been screened for fibromyalgia? I was recently diagnosed with this as well, and what it basically is is overactive nerves, which sounds a little like you describe.
From what I have learned, people with fibro are more prone to other autoimmune diseases, as well. Have you ever been tested for any of the other autoimmune or neurological diseases?
If you feel comfortable, start a new thread by clicking on the add a post button and tell us a little more. Some of the others here may not see this post, as it is at the end of a really long thread. I, myself, don't always see the posts on this thread.
Hang in there and hope to hear from you soon!
Sarah
Hey everyone. What brings me here is this..thing. I have trouble describing it since it doesnt make logical sense, even to me. But all physical sensation causes pain, and only pain. It always has, since my earliest memories. This includes my own touch. There are parts, like my stomach, where my own gentle touch will cause me to contract in reflex, pretty extremely. Or like my arm, which feels likes im being scratched hard. Its like everythings made of sharp glass.
Upon realizing that i will never be able to experience pleasurable physical contact of any sort, I think I collapsed a bit inside.
I dont think ive ever actually seen someone else with this problem... which kinda bothers me a lot.
Upon realizing that i will never be able to experience pleasurable physical contact of any sort, I think I collapsed a bit inside.
I dont think ive ever actually seen someone else with this problem... which kinda bothers me a lot.
*whoops I thought I had responded here, guess not :) ignore my other post.
Hi there, my name is Stacie. I have a husband and 2 boys. I have been a part of the MS community for quite sometime, trying to find answers. I am a limbolander, so glad to find this community. I have had symptoms of MS for a long time. My frist symptom was vertigo and it started in 2007. I fell twice down the stairs during this time. It's as if my foot didn't know where to go or how to move right. Since, I've had symptoms of tingling, numbness, heaviness, stiffening of my left leg. I've had horrible pain behind my right eye with blurry vision and dark spots, the right sdie of my face has gone numb, tongue numb, I have muscle weakness, and extreme fatigue. Just recently have been losing my balance a lot and after my last bout of numbness in my left leg, the left arm went numb and spread to my chest/trunk. It's been quite an ordeal, but unfortunately no answers. MRI of brain and cervical spine have come back negative for lesions and my recent LP was normal. I feel like I'm going crazy sometimes, living with these symptoms and no answers. I'm sure all of you feel the same way or similar. I look forward to getting to know you all more and how you are coping and/or taking action on behalf of your health.
Blessings
Stacie
Hi there, my name is Stacie. I have a husband and 2 boys. I have been a part of the MS community for quite sometime, trying to find answers. I am a limbolander, so glad to find this community. I have had symptoms of MS for a long time. My frist symptom was vertigo and it started in 2007. I fell twice down the stairs during this time. It's as if my foot didn't know where to go or how to move right. Since, I've had symptoms of tingling, numbness, heaviness, stiffening of my left leg. I've had horrible pain behind my right eye with blurry vision and dark spots, the right sdie of my face has gone numb, tongue numb, I have muscle weakness, and extreme fatigue. Just recently have been losing my balance a lot and after my last bout of numbness in my left leg, the left arm went numb and spread to my chest/trunk. It's been quite an ordeal, but unfortunately no answers. MRI of brain and cervical spine have come back negative for lesions and my recent LP was normal. I feel like I'm going crazy sometimes, living with these symptoms and no answers. I'm sure all of you feel the same way or similar. I look forward to getting to know you all more and how you are coping and/or taking action on behalf of your health.
Blessings
Stacie
Hi I lived in Germany for 3 years in Munster. Loved it there.
Anyway something you wrote reminded me of myself. You said "s and the constant feeling of being pulled over to the right..........
Me too. One of my first symptoms after I went blind and was finally told I had optical neuritis (about 7 years after the event), was when I went into work, I would lean towards the right and along the wall was a row of filing cabinets, and every MORNING, I would fall into them lol. I was blue on my right arm.
IF you were then told you had an inflammatory disease going on how can they then give you a diagnosis of CD....thats ridiculous.
CD is a throw away diagnosis. The way I read CD is the patient has a long history of surgical illnesses, and over time develops CD which shows up in strange disorders which have no clinical causes.
JUST because your lumbur puncture is clear does not mean you dont have MS.
IF you look at the top of our forum there are useful links, and one of them explains very well about having a CLEAR LUMBUR PUNCTURE but still having MS ok.
IF you had CD I dont expect you would have such long periods of quiet times when your disease is in remission.
I had a lumbur puncture which my neuro told me was high in O BANDS which is what they would want to see for MS, BUT unfortunately for me my blood test taken at the same time showed inflammation, so this one blood test made my LP NEGATIVE for MS. The fact the inflammation could just be a coincidence has nothing to do with it. AND the point is if my blood is full of INFLAMMATION then why is it...........
Dont be fobbed off something inflammatory is obviously going on with you.
Have you had an MRI of the full spine? That is where they should be looking not in your brain.
LP is too invasive and doesnt necessarily tell you that you have MS but can tell you that you dont have other diseases that would show up in the serum.
NEUROLOGICAL DISORDERS SHOULD not be so hard to diagnose.
The problem is there are too many neuros who all do it their way.
I think at the time of an appointment the patient should fill in a question sheet of everything that has gone on, and when it started and if there was any outside factors that could have triggered it.
I know one guy who told me before his started he had an accident in his car. I mentioned to him Chiari malformation. He had been told he was a time waster basically. Anyway he did the research and took this new research to a new care provider in the states and BINGO guess what it was....yes CM.
You might end up with MS, but it doesnt read CD to me. No way. I have met people with CD and they really do have it there is a different way they portray themselves.
I believe I have MS. My GP thinks I do, and but for one blood test i would be an official MS forum user lol.
BUT even without the label I dont care anymore, because at 60 for me there is nothing i can take that would heal me. I just live for each day, and enjoy the good times with my family, i stay as stress free as I can, and i live a healthy diet. I even started to follow the MS RECOVERY DIET, and some of my symptoms have actually got easier to cope with.
Big hugs and try to have a great xmas with your family. Mariax
Anyway something you wrote reminded me of myself. You said "s and the constant feeling of being pulled over to the right..........
Me too. One of my first symptoms after I went blind and was finally told I had optical neuritis (about 7 years after the event), was when I went into work, I would lean towards the right and along the wall was a row of filing cabinets, and every MORNING, I would fall into them lol. I was blue on my right arm.
IF you were then told you had an inflammatory disease going on how can they then give you a diagnosis of CD....thats ridiculous.
CD is a throw away diagnosis. The way I read CD is the patient has a long history of surgical illnesses, and over time develops CD which shows up in strange disorders which have no clinical causes.
JUST because your lumbur puncture is clear does not mean you dont have MS.
IF you look at the top of our forum there are useful links, and one of them explains very well about having a CLEAR LUMBUR PUNCTURE but still having MS ok.
IF you had CD I dont expect you would have such long periods of quiet times when your disease is in remission.
I had a lumbur puncture which my neuro told me was high in O BANDS which is what they would want to see for MS, BUT unfortunately for me my blood test taken at the same time showed inflammation, so this one blood test made my LP NEGATIVE for MS. The fact the inflammation could just be a coincidence has nothing to do with it. AND the point is if my blood is full of INFLAMMATION then why is it...........
Dont be fobbed off something inflammatory is obviously going on with you.
Have you had an MRI of the full spine? That is where they should be looking not in your brain.
LP is too invasive and doesnt necessarily tell you that you have MS but can tell you that you dont have other diseases that would show up in the serum.
NEUROLOGICAL DISORDERS SHOULD not be so hard to diagnose.
The problem is there are too many neuros who all do it their way.
I think at the time of an appointment the patient should fill in a question sheet of everything that has gone on, and when it started and if there was any outside factors that could have triggered it.
I know one guy who told me before his started he had an accident in his car. I mentioned to him Chiari malformation. He had been told he was a time waster basically. Anyway he did the research and took this new research to a new care provider in the states and BINGO guess what it was....yes CM.
You might end up with MS, but it doesnt read CD to me. No way. I have met people with CD and they really do have it there is a different way they portray themselves.
I believe I have MS. My GP thinks I do, and but for one blood test i would be an official MS forum user lol.
BUT even without the label I dont care anymore, because at 60 for me there is nothing i can take that would heal me. I just live for each day, and enjoy the good times with my family, i stay as stress free as I can, and i live a healthy diet. I even started to follow the MS RECOVERY DIET, and some of my symptoms have actually got easier to cope with.
Big hugs and try to have a great xmas with your family. Mariax
Hi everyone,
Amazing how many people are in the same boat. I'm 42, living in Germany, married with one son (who has Asperger syndrome) and I have been having weird neurological thingies since I was 26...
1996: admitted to hospital with dizziness, visual disturbances and the constant feeling of being pulled over to the right. Tests indicated "inflammatory disease of the central nervous system", cortisone infusions given, but lumbar puncture later came back clear. Symptoms abated in about 4-6 weeks.
1999: same again. Tests, MRI, lumbar puncture normal except for slight deviation in EEG (right half of my brain too slow or something - no comment *lol*) Symptoms abated in about 3-4 weeks.
2000: and again. Neurological tests again ok and I am diagnosed with conversion disorder. Symptoms abate within a couple of months.
2003: Another relapse, this time with terrible weakness and feeling of paralysis in my legs. Due to my previous diagnosis of conversion disorder, I am admitted to a psychiatric clinic without further neurological testing. Symptoms abate within 2 months.
After that, things were more or less ok for 8 years until about a month ago, when the whole business flared up again totally unexpectedly, just like last time but now also with tingling in my right arm and leg and the right side of my face. I spent another week in hospital and was diagnosed with vestibular neuropathy in the right ear. An MRI scan of my head also found "isolated periventricular lesions" in the right side of my brain plus "hyperactive patellar tendon reflexes". I still need to go for another lumbar puncture, but I can't help thinking that this is looking more and more like MS.
How I wish diagnosing neurological disorders was as easy as diagnosing a broken bone....
Amazing how many people are in the same boat. I'm 42, living in Germany, married with one son (who has Asperger syndrome) and I have been having weird neurological thingies since I was 26...
1996: admitted to hospital with dizziness, visual disturbances and the constant feeling of being pulled over to the right. Tests indicated "inflammatory disease of the central nervous system", cortisone infusions given, but lumbar puncture later came back clear. Symptoms abated in about 4-6 weeks.
1999: same again. Tests, MRI, lumbar puncture normal except for slight deviation in EEG (right half of my brain too slow or something - no comment *lol*) Symptoms abated in about 3-4 weeks.
2000: and again. Neurological tests again ok and I am diagnosed with conversion disorder. Symptoms abate within a couple of months.
2003: Another relapse, this time with terrible weakness and feeling of paralysis in my legs. Due to my previous diagnosis of conversion disorder, I am admitted to a psychiatric clinic without further neurological testing. Symptoms abate within 2 months.
After that, things were more or less ok for 8 years until about a month ago, when the whole business flared up again totally unexpectedly, just like last time but now also with tingling in my right arm and leg and the right side of my face. I spent another week in hospital and was diagnosed with vestibular neuropathy in the right ear. An MRI scan of my head also found "isolated periventricular lesions" in the right side of my brain plus "hyperactive patellar tendon reflexes". I still need to go for another lumbar puncture, but I can't help thinking that this is looking more and more like MS.
How I wish diagnosing neurological disorders was as easy as diagnosing a broken bone....
I posted a question about my last two MRI's. I have not been diagnosed yet. My doctor is sending me to Brigham and Women's in Boston. She said my case is not black and white.
I started having problems in 2007 after I had my appendix out. Started with word finding problems. Doctor said it was a sign of stroke during surgery but was confused because he thought it went well. CT scan revealed a small stroke in the right basal ganglia and something in the robins virchow space. I've switched neurologists 5 times. It seems like all they keep me going for is MRI after MRI but no diagnosis. So this last doctor has been great. In July a small plaque showed up on the right parietal region. MRI in October shows some other new things. Lesion in the left basal ganglia and corpus callosum. My body hurts all over. Arms, legs. Sharp stabbing pains in feet and legs. I would just love an answer.
Thanks for listening.
I started having problems in 2007 after I had my appendix out. Started with word finding problems. Doctor said it was a sign of stroke during surgery but was confused because he thought it went well. CT scan revealed a small stroke in the right basal ganglia and something in the robins virchow space. I've switched neurologists 5 times. It seems like all they keep me going for is MRI after MRI but no diagnosis. So this last doctor has been great. In July a small plaque showed up on the right parietal region. MRI in October shows some other new things. Lesion in the left basal ganglia and corpus callosum. My body hurts all over. Arms, legs. Sharp stabbing pains in feet and legs. I would just love an answer.
Thanks for listening.
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