Discussions By Condition: Medical Stories

I suspect I have a rare neurological disease.

Posted In: Medical Stories 10 Replies
  • Posted By: jackies daughter
  • December 14, 2009
  • 05:15 AM

First off, I have been to several doctors and neurologists and none have been able to tell me anything. Surprise surprise. So. I have a VERY long list of symptoms some of which are causing problems in my daily life. Most of them started about a year ago in September somewheres. My hands and feet randomly one day turned red and started burning. I couldn't touch anything cause it felt like a match was in my skin. It was constant with the exception that it disappeared when i went to bed and reappeared the next morning. Then, the tips of my fingers went partially numb. I can still feel pressure but have much decreased sensitivity to temperature. The symptoms persisted through the winter and finally eased off a little with the spring. Then in summer, I began having what the doctors said were panic attacks. I don't think they were. After almost every meal I would get a LOT of pressure on my chest. It made it hard to breath and I never felt satisfied when I took a breath. Occassionally sharp pains would should up my side. By the fall, those symptoms eased up and more came. I began having random jerks in my body. While falling asleep I would get a feeling of anxiety before my lower limbs would ***k two or three times rapidly. That slowly moved locations and went to my neck. My neck would ***k to the right two or so times a day. WIth the winter, my old symptoms from last winter reappeared. Numbness, burning, AND the jerks in my neck.
Other symptoms: tingling in left arm, unusual heart beat, IBS.

Also here's some extra notes: I have been tested for B12, Lyme, diabetes, MS, all standard blood tests. I have hat multiple MRIs and a CAT scan, and more.

Also: the burning increases dramatically if I am holding an electronic (cell phone, computer, etc.) sounds weird but yeah. I suspect I have something that causes demyelination, the deterioration of the protective coating around my nerves.

Any ideas?

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10 Replies:

  • First off, I have been to several doctors and neurologists and none have been able to tell me anything. Surprise surprise. So. I have a VERY long list of symptoms some of which are causing problems in my daily life. Most of them started about a year ago in September somewheres. My hands and feet randomly one day turned red and started burning. I couldn't touch anything cause it felt like a match was in my skin. It was constant with the exception that it disappeared when i went to bed and reappeared the next morning. Then, the tips of my fingers went partially numb. I can still feel pressure but have much decreased sensitivity to temperature. The symptoms persisted through the winter and finally eased off a little with the spring. Then in summer, I began having what the doctors said were panic attacks. I don't think they were. After almost every meal I would get a LOT of pressure on my chest. It made it hard to breath and I never felt satisfied when I took a breath. Occassionally sharp pains would should up my side. By the fall, those symptoms eased up and more came. I began having random jerks in my body. While falling asleep I would get a feeling of anxiety before my lower limbs would ***k two or three times rapidly. That slowly moved locations and went to my neck. My neck would ***k to the right two or so times a day. WIth the winter, my old symptoms from last winter reappeared. Numbness, burning, AND the jerks in my neck.Other symptoms: tingling in left arm, unusual heart beat, IBS. Also here's some extra notes: I have been tested for B12, Lyme, diabetes, MS, all standard blood tests. I have hat multiple MRIs and a CAT scan, and more. Also: the burning increases dramatically if I am holding an electronic (cell phone, computer, etc.) sounds weird but yeah. I suspect I have something that causes demyelination, the deterioration of the protective coating around my nerves. Any ideas?Hi. I found it intersting reading your post. I have many of the same symptoms and more, but mine started several years ago and get progressively worse, incorporating more body systems over the years. I also had many test including MRI's and saw a neurologist. A Naturopath asked my primary care MD to order a CAT scan with contrast. This showed some very unusual lesions on my lungs. I started to lose my vision in one eye and was dx'd with medial uveitis. The Retina specialist said then that it could be related to Sarcoidosis, but the lesions on my lungs did not look typical for this condition according to the radiologists report. He sent me to a rheumatologist who ruled out Sarcoidosis based on some other tests. The Neurologist saw lesions on my brain and spinal cord following an MRI, but could not explain what they were and did not feel they were consistent with MS. Pain in my thoracic spine had them send me to a back doctor who repeated an MRI and found a fatty tumor and a hemangioma in my thoracic spine, but they did not feel they were of any concern. Over the years I have been on Prednisone many times, antidepressants many times, Methotrexate for a time and nothing really seems to help much. One of the latest symptoms is choking and coughing. I returned to the Rheumatologist who originally saw me and he thought that maybe it could be Sarcoidosis after all. I have since read that this condition/disease can affect your brain and central nervous system as well as eyes, lungs and just about any other organ system. Maybe this could be what you are experiencing. If so, I wish you luck. Hope this is at all helpful.
    Anonymous 42789 Replies
    • December 17, 2009
    • 09:57 PM
    • 0
    Flag this Response
  • First off, I have been to several doctors and neurologists and none have been able to tell me anything. Surprise surprise. So. I have a VERY long list of symptoms some of which are causing problems in my daily life. Most of them started about a year ago in September somewheres. My hands and feet randomly one day turned red and started burning. I couldn't touch anything cause it felt like a match was in my skin. It was constant with the exception that it disappeared when i went to bed and reappeared the next morning. Then, the tips of my fingers went partially numb. I can still feel pressure but have much decreased sensitivity to temperature. The symptoms persisted through the winter and finally eased off a little with the spring. Then in summer, I began having what the doctors said were panic attacks. I don't think they were. After almost every meal I would get a LOT of pressure on my chest. It made it hard to breath and I never felt satisfied when I took a breath. Occassionally sharp pains would should up my side. By the fall, those symptoms eased up and more came. I began having random jerks in my body. While falling asleep I would get a feeling of anxiety before my lower limbs would ***k two or three times rapidly. That slowly moved locations and went to my neck. My neck would ***k to the right two or so times a day. WIth the winter, my old symptoms from last winter reappeared. Numbness, burning, AND the jerks in my neck.Other symptoms: tingling in left arm, unusual heart beat, IBS. Also here's some extra notes: I have been tested for B12, Lyme, diabetes, MS, all standard blood tests. I have hat multiple MRIs and a CAT scan, and more. Also: the burning increases dramatically if I am holding an electronic (cell phone, computer, etc.) sounds weird but yeah. I suspect I have something that causes demyelination, the deterioration of the protective coating around my nerves. Any ideas? It could very possibly be active b12 deficiencies. The standard b12 tests ARE TOTALLY WORTHLESS in ruling out b12 deficiencies.Read the first link first and them over to the second link to discuss it.http://forums.wrongdiagnosis.com/sho...517#post219517http://forums.wrongdiagnosis.com/sho...519#post219519
    Freddd 3576 Replies Flag this Response
  • First off, I have been to several doctors and neurologists and none have been able to tell me anything. Surprise surprise. So. I have a VERY long list of symptoms some of which are causing problems in my daily life. Most of them started about a year ago in September somewheres. My hands and feet randomly one day turned red and started burning. I couldn't touch anything cause it felt like a match was in my skin. It was constant with the exception that it disappeared when i went to bed and reappeared the next morning. Then, the tips of my fingers went partially numb. I can still feel pressure but have much decreased sensitivity to temperature. The symptoms persisted through the winter and finally eased off a little with the spring. Then in summer, I began having what the doctors said were panic attacks. I don't think they were. After almost every meal I would get a LOT of pressure on my chest. It made it hard to breath and I never felt satisfied when I took a breath. Occassionally sharp pains would should up my side. By the fall, those symptoms eased up and more came. I began having random jerks in my body. While falling asleep I would get a feeling of anxiety before my lower limbs would ***k two or three times rapidly. That slowly moved locations and went to my neck. My neck would ***k to the right two or so times a day. WIth the winter, my old symptoms from last winter reappeared. Numbness, burning, AND the jerks in my neck.Other symptoms: tingling in left arm, unusual heart beat, IBS. Also here's some extra notes: I have been tested for B12, Lyme, diabetes, MS, all standard blood tests. I have hat multiple MRIs and a CAT scan, and more. Also: the burning increases dramatically if I am holding an electronic (cell phone, computer, etc.) sounds weird but yeah. I suspect I have something that causes demyelination, the deterioration of the protective coating around my nerves. Any ideas?Have you checked out Raynaud's Disease? This is a cold sensitive neurological disorder that can be associated with other illnesses, but if you have it, that would be a good place to start.
    Anonymous 42789 Replies Flag this Response
  • what about erythromelalgia a channelopathy?
    Anonymous 42789 Replies Flag this Response
  • Dear Jackie's Daughter,8 years ago I had an illness that was not fully diagnosed or understood, but went away with treatment. At any rate, I understand how frustrating the medical system is that many doctors aren't educated enough to spot diseases and disorders that are surely already well understood by specialists.I'd like to put forward some suggestions based on the information you provided.If they started in September, then you need to look at everything that happened in that time. Were you injured at all, or did you hit your head. Were you exposed to polluted air? Did you experience any major losses or life changes? Anything significant that happened in that time period is likely to be a contributing factor in your sudden illness.As for the dermal irritation, it sounds as though you are experiencing an allergic reaction to something in your environment. Whatever that is, it is absent in your bedroom. This would be something that came in contact with your skin or that you ingested. Since it is most pronounced around electronics, it could be something used in the production of electronic devices. Bedrooms generally have less electronic equipment as common areas and especially offices. There are many chemicals used in the production of that equipment and in the coating of it, which are foreign to the human body and could cause a reaction. Do you have other allergies, or have you had frequent rashes at any point in your life? Are you on any prescription medication?The decreased sensitivity in your extremities, shortness of breath, and spasms point to nerve damage along the spine or in the brain. Did you sustain any damage to your head or back in September or in the few years prior? If so, this could potentially cause those symptoms. This could have potentially triggered an increased sensitivity to an environmental factor, though that is unlikely. The skin irritation may have a different cause than the other symptoms.I hope my perspective is helpful, and that you recover swiftly. All the best,Stephen
    Anonymous 42789 Replies
    • November 16, 2010
    • 04:21 AM
    • 0
    Flag this Response
  • First off, I have been to several doctors and neurologists and none have been able to tell me anything. Surprise surprise. So. I have a VERY long list of symptoms some of which are causing problems in my daily life. Most of them started about a year ago in September somewheres. My hands and feet randomly one day turned red and started burning. I couldn't touch anything cause it felt like a match was in my skin. It was constant with the exception that it disappeared when i went to bed and reappeared the next morning. Then, the tips of my fingers went partially numb. I can still feel pressure but have much decreased sensitivity to temperature. The symptoms persisted through the winter and finally eased off a little with the spring. Then in summer, I began having what the doctors said were panic attacks. I don't think they were. After almost every meal I would get a LOT of pressure on my chest. It made it hard to breath and I never felt satisfied when I took a breath. Occassionally sharp pains would should up my side. By the fall, those symptoms eased up and more came. I began having random jerks in my body. While falling asleep I would get a feeling of anxiety before my lower limbs would **** two or three times rapidly. That slowly moved locations and went to my neck. My neck would **** to the right two or so times a day. WIth the winter, my old symptoms from last winter reappeared. Numbness, burning, AND the jerks in my neck.Other symptoms: tingling in left arm, unusual heart beat, IBS. Also here's some extra notes: I have been tested for B12, Lyme, diabetes, MS, all standard blood tests. I have hat multiple MRIs and a CAT scan, and more. Also: the burning increases dramatically if I am holding an electronic (cell phone, computer, etc.) sounds weird but yeah. I suspect I have something that causes demyelination, the deterioration of the protective coating around my nerves. Any ideas? hi im lookin
    boocosper 5 Replies
    • January 28, 2013
    • 07:55 PM
    • 0
    Flag this Response
  • First off, I have been to several doctors and neurologists and none have been able to tell me anything. Surprise surprise. So. I have a VERY long list of symptoms some of which are causing problems in my daily life. Most of them started about a year ago in September somewheres. My hands and feet randomly one day turned red and started burning. I couldn't touch anything cause it felt like a match was in my skin. It was constant with the exception that it disappeared when i went to bed and reappeared the next morning. Then, the tips of my fingers went partially numb. I can still feel pressure but have much decreased sensitivity to temperature. The symptoms persisted through the winter and finally eased off a little with the spring. Then in summer, I began having what the doctors said were panic attacks. I don't think they were. After almost every meal I would get a LOT of pressure on my chest. It made it hard to breath and I never felt satisfied when I took a breath. Occassionally sharp pains would should up my side. By the fall, those symptoms eased up and more came. I began having random jerks in my body. While falling asleep I would get a feeling of anxiety before my lower limbs would **** two or three times rapidly. That slowly moved locations and went to my neck. My neck would **** to the right two or so times a day. WIth the winter, my old symptoms from last winter reappeared. Numbness, burning, AND the jerks in my neck.Other symptoms: tingling in left arm, unusual heart beat, IBS. Also here's some extra notes: I have been tested for B12, Lyme, diabetes, MS, all standard blood tests. I have hat multiple MRIs and a CAT scan, and more. Also: the burning increases dramatically if I am holding an electronic (cell phone, computer, etc.) sounds weird but yeah. I suspect I have something that causes demyelination, the deterioration of the protective coating around my nerves. Any ideas? what diseases have u been tested for
    boocosper 5 Replies
    • January 28, 2013
    • 07:59 PM
    • 0
    Flag this Response
  • First off, I have been to several doctors and neurologists and none have been able to tell me anything. Surprise surprise. So. I have a VERY long list of symptoms some of which are causing problems in my daily life. Most of them started about a year ago in September somewheres. My hands and feet randomly one day turned red and started burning. I couldn't touch anything cause it felt like a match was in my skin. It was constant with the exception that it disappeared when i went to bed and reappeared the next morning. Then, the tips of my fingers went partially numb. I can still feel pressure but have much decreased sensitivity to temperature. The symptoms persisted through the winter and finally eased off a little with the spring. Then in summer, I began having what the doctors said were panic attacks. I don't think they were. After almost every meal I would get a LOT of pressure on my chest. It made it hard to breath and I never felt satisfied when I took a breath. Occassionally sharp pains would should up my side. By the fall, those symptoms eased up and more came. I began having random jerks in my body. While falling asleep I would get a feeling of anxiety before my lower limbs would **** two or three times rapidly. That slowly moved locations and went to my neck. My neck would **** to the right two or so times a day. WIth the winter, my old symptoms from last winter reappeared. Numbness, burning, AND the jerks in my neck.Other symptoms: tingling in left arm, unusual heart beat, IBS. Also here's some extra notes: I have been tested for B12, Lyme, diabetes, MS, all standard blood tests. I have hat multiple MRIs and a CAT scan, and more. Also: the burning increases dramatically if I am holding an electronic (cell phone, computer, etc.) sounds weird but yeah. I suspect I have something that causes demyelination, the deterioration of the protective coating around my nerves. Any ideas? in the burning could it be carpal tunnel syndrome
    boocosper 5 Replies
    • January 28, 2013
    • 08:05 PM
    • 0
    Flag this Response
  • Hi. I found it intersting reading your post. I have many of the same symptoms and more, but mine started several years ago and get progressively worse, incorporating more body systems over the years. I also had many test including MRI's and saw a neurologist. A Naturopath asked my primary care MD to order a CAT scan with contrast. This showed some very unusual lesions on my lungs. I started to lose my vision in one eye and was dx'd with medial uveitis. The Retina specialist said then that it could be related to Sarcoidosis, but the lesions on my lungs did not look typical for this condition according to the radiologists report. He sent me to a rheumatologist who ruled out Sarcoidosis based on some other tests. The Neurologist saw lesions on my brain and spinal cord following an MRI, but could not explain what they were and did not feel they were consistent with MS. Pain in my thoracic spine had them send me to a back doctor who repeated an MRI and found a fatty tumor and a hemangioma in my thoracic spine, but they did not feel they were of any concern. Over the years I have been on Prednisone many times, antidepressants many times, Methotrexate for a time and nothing really seems to help much. One of the latest symptoms is choking and coughing. I returned to the Rheumatologist who originally saw me and he thought that maybe it could be Sarcoidosis after all. I have since read that this condition/disease can affect your brain and central nervous system as well as eyes, lungs and just about any other organ system. Maybe this could be what you are experiencing. If so, I wish you luck. Hope this is at all helpful. but what about the hand thing sarcoidosis doesnt have that
    boocosper 5 Replies
    • February 15, 2013
    • 07:33 PM
    • 0
    Flag this Response
  • First off, I have been to several doctors and neurologists and none have been able to tell me anything. Surprise surprise. So. I have a VERY long list of symptoms some of which are causing problems in my daily life. Most of them started about a year ago in September somewheres. My hands and feet randomly one day turned red and started burning. I couldn't touch anything cause it felt like a match was in my skin. It was constant with the exception that it disappeared when i went to bed and reappeared the next morning. Then, the tips of my fingers went partially numb. I can still feel pressure but have much decreased sensitivity to temperature. The symptoms persisted through the winter and finally eased off a little with the spring. Then in summer, I began having what the doctors said were panic attacks. I don't think they were. After almost every meal I would get a LOT of pressure on my chest. It made it hard to breath and I never felt satisfied when I took a breath. Occassionally sharp pains would should up my side. By the fall, those symptoms eased up and more came. I began having random jerks in my body. While falling asleep I would get a feeling of anxiety before my lower limbs would **** two or three times rapidly. That slowly moved locations and went to my neck. My neck would **** to the right two or so times a day. WIth the winter, my old symptoms from last winter reappeared. Numbness, burning, AND the jerks in my neck.Other symptoms: tingling in left arm, unusual heart beat, IBS. Also here's some extra notes: I have been tested for B12, Lyme, diabetes, MS, all standard blood tests. I have hat multiple MRIs and a CAT scan, and more. Also: the burning increases dramatically if I am holding an electronic (cell phone, computer, etc.) sounds weird but yeah. I suspect I have something that causes demyelination, the deterioration of the protective coating around my nerves. Any ideas? have u eaten these recently i, Clitocybe acromelalga from Japan, and Clitocybe amoenolens from France, has led to several cases of mushroom-induced erythromelalgia which lasted from 8 days to 5 months.10]edit]
    boocosper 5 Replies
    • February 15, 2013
    • 07:52 PM
    • 0
    Flag this Response
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