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Neurology (Expert Forum)
Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment
by ER__0, Jan 01, 1995 12:00AM
Posted By ER on May 01, 1999 at 10:08:48
Dear CCF Neuro:
I have been to numerous doctors in the past 5 months with the constellation of symptoms described below and still have received neither a confirmed diagnosis or treatment. I hope you can help, and I apologize in advance for my very, very long post...
I was a healthy 35 year old female until early December 98, when I developed faint tingling in my fingertips, toes and inside of left leg. Within about one week, it spread ALL OVER my body - scalp, face, legs (calves and thighs), feet, torso, back, arms, hands, fingers while increasing significantly in intensity. Along with the constant systemic paresthesias I also experienced painful electric shocks and intermittent buzzes that migrated throughout my body, particularly in my left hand and right foot, but other places as well. Also had the feeling of being "bitten" by bugs and having the "creepy crawlies" all over. I felt like a human TENS unit. It's the only way I can describe the sensation. These feelings occurred constantly, relentlessly - 24 hours per day without any relief. Eventually the skin on my fingertips became very sensitive and felt like it was burned and for several days my fingertips were numb.
Preceding the start of the paresthesias by about two weeks, I woke up with a strange bug/flu (on Thanksgiving Day!). Sore throat, cough, etc. I was prescribed a 10 day course of PCE. Oddly, I was completely better in two days. Also, a day or two before the paresthesias began, my podiatrist injected my left heel with cortisone in attempt to calm down a stubborn case of plantar fasciitis that had persisted for months prior. (I had received one previous injection in August.) I was also given an Rx for Daypro to help the heel pain and inflammation. Associating the paresthesias with the Daypro, I immediately discontinued taking it.
Several weeks after the onset, other odd symptoms came and went, including an intense toothache type pain in the index and middle finger of my left hand, same for left foot; "dead" spots that traveled around my body - especially between my toes; deep bone pain in my right upper arm; a strange perception problem where I felt disconnected from myself; lightheadedness; sore ribs; sore lymph nodes; nausea/motion sickness; floaters and flashing lights in my right eye. All this while the chronic painful paresthesias continued. I have also had on and off night sweats and a burning bladder.
In early March 99, I was overcome by extreme burning nerve and muscle pain that, in addition to the chronic paresthesias, came on suddenly and, crazy as it sounds, moved down my spine over the course of several days. I could actually feel the "thing" as it traveled down my back - first affecting my shoulders and arms, then my trunk, and finally my legs, and along its path leaving me with terrible burning neuropathic and muscle pain. In addition, my skin, from neck to foot felt burned. I could not wear clothes without being in pain.
It is now 5 months since this began, and although somewhat better, I still suffer from systemic, painful paresthesias (even my tongue sometimes!), on and off burning pain across my back and along my limbs, left side finger/toe pain, and occasional muscle twitches (a more recent development). I still have occasional lightheadedness. I am on Neurontin, 1200 mg daily, which seems to alleviate some of the abnormal sensations. In the last few days I began feeling an increase in the painfful sensations and fear a relapse.
Over the course of these last few months, I have seen 2 neurologists, 2 infectious disease specialists, 1 rheumatologist, 1 internist and 1 psychiatrist (to rule out the possibility of all this "being in my head"). All performed complete work-ups. Collectively, I have had numerous general and neurological physical exams, chest x-ray, brain MRI, c-spine MRI, somatosensory evoked response, and complete blood work (more than once). I have been tested for Lyme twice, HIV, mono, iron overload, CMV, HTLV-1, and a host of other things I can't even remember. All the tests showed normal/negative results. I seem to be the picture of health. Although one neuro was looking for MS, my brain MRI was perfectly clear and SSER was normal. C-spine MRI showed disc bulges at C4-5-6, and a moderate herniation at C6-7. I have not yet had an EMG or a spinal tap. The only odd finding was TSH. In January, it measured on the low side of normal at .73 (T3 and T4 were normal). In late March, TSH was retested and was unmeasurable at <0.1 (again T3 and T4 were normal). It was retested 3 weeks later with the same result. I have not had symptoms of hyperthyroidism. I'll be seeing an endocrinologist in a few days.
Not one of the many physicians was able to give me an absolute diagnosis - they had never heard of my symptomology. I was told several things: polyneuropathy, polyridiculoneuropathy, guillain-barre variant, post-viral syndrome. They said my condition will, in time, resolve itself. Meanwhile, I am left with relentless paresthesias without much relief.
Can you please offer your opinion as to the validity of "post-viral syndrome," the possibility of MS or Lyme, what I can do about the buzzing nerves, the prognosis for getting better in time, and what other avenues, if any, I should pursue for diagnosis/treatment. Should I come to the CCF?
Might there be a connection between my symptoms and perhaps an allergy to the cortisone injection? Could the cortisone have been tainted and caused a severe reaction? Is the fact that I had a passing upper respiratory bug two weeks prior more evidence of "post-viral?"
Thank you in advance for your help and again, my apologies for the very lengthy post.
ER
Dear CCF Neuro:
I have been to numerous doctors in the past 5 months with the constellation of symptoms described below and still have received neither a confirmed diagnosis or treatment. I hope you can help, and I apologize in advance for my very, very long post...
I was a healthy 35 year old female until early December 98, when I developed faint tingling in my fingertips, toes and inside of left leg. Within about one week, it spread ALL OVER my body - scalp, face, legs (calves and thighs), feet, torso, back, arms, hands, fingers while increasing significantly in intensity. Along with the constant systemic paresthesias I also experienced painful electric shocks and intermittent buzzes that migrated throughout my body, particularly in my left hand and right foot, but other places as well. Also had the feeling of being "bitten" by bugs and having the "creepy crawlies" all over. I felt like a human TENS unit. It's the only way I can describe the sensation. These feelings occurred constantly, relentlessly - 24 hours per day without any relief. Eventually the skin on my fingertips became very sensitive and felt like it was burned and for several days my fingertips were numb.
Preceding the start of the paresthesias by about two weeks, I woke up with a strange bug/flu (on Thanksgiving Day!). Sore throat, cough, etc. I was prescribed a 10 day course of PCE. Oddly, I was completely better in two days. Also, a day or two before the paresthesias began, my podiatrist injected my left heel with cortisone in attempt to calm down a stubborn case of plantar fasciitis that had persisted for months prior. (I had received one previous injection in August.) I was also given an Rx for Daypro to help the heel pain and inflammation. Associating the paresthesias with the Daypro, I immediately discontinued taking it.
Several weeks after the onset, other odd symptoms came and went, including an intense toothache type pain in the index and middle finger of my left hand, same for left foot; "dead" spots that traveled around my body - especially between my toes; deep bone pain in my right upper arm; a strange perception problem where I felt disconnected from myself; lightheadedness; sore ribs; sore lymph nodes; nausea/motion sickness; floaters and flashing lights in my right eye. All this while the chronic painful paresthesias continued. I have also had on and off night sweats and a burning bladder.
In early March 99, I was overcome by extreme burning nerve and muscle pain that, in addition to the chronic paresthesias, came on suddenly and, crazy as it sounds, moved down my spine over the course of several days. I could actually feel the "thing" as it traveled down my back - first affecting my shoulders and arms, then my trunk, and finally my legs, and along its path leaving me with terrible burning neuropathic and muscle pain. In addition, my skin, from neck to foot felt burned. I could not wear clothes without being in pain.
It is now 5 months since this began, and although somewhat better, I still suffer from systemic, painful paresthesias (even my tongue sometimes!), on and off burning pain across my back and along my limbs, left side finger/toe pain, and occasional muscle twitches (a more recent development). I still have occasional lightheadedness. I am on Neurontin, 1200 mg daily, which seems to alleviate some of the abnormal sensations. In the last few days I began feeling an increase in the painfful sensations and fear a relapse.
Over the course of these last few months, I have seen 2 neurologists, 2 infectious disease specialists, 1 rheumatologist, 1 internist and 1 psychiatrist (to rule out the possibility of all this "being in my head"). All performed complete work-ups. Collectively, I have had numerous general and neurological physical exams, chest x-ray, brain MRI, c-spine MRI, somatosensory evoked response, and complete blood work (more than once). I have been tested for Lyme twice, HIV, mono, iron overload, CMV, HTLV-1, and a host of other things I can't even remember. All the tests showed normal/negative results. I seem to be the picture of health. Although one neuro was looking for MS, my brain MRI was perfectly clear and SSER was normal. C-spine MRI showed disc bulges at C4-5-6, and a moderate herniation at C6-7. I have not yet had an EMG or a spinal tap. The only odd finding was TSH. In January, it measured on the low side of normal at .73 (T3 and T4 were normal). In late March, TSH was retested and was unmeasurable at <0.1 (again T3 and T4 were normal). It was retested 3 weeks later with the same result. I have not had symptoms of hyperthyroidism. I'll be seeing an endocrinologist in a few days.
Not one of the many physicians was able to give me an absolute diagnosis - they had never heard of my symptomology. I was told several things: polyneuropathy, polyridiculoneuropathy, guillain-barre variant, post-viral syndrome. They said my condition will, in time, resolve itself. Meanwhile, I am left with relentless paresthesias without much relief.
Can you please offer your opinion as to the validity of "post-viral syndrome," the possibility of MS or Lyme, what I can do about the buzzing nerves, the prognosis for getting better in time, and what other avenues, if any, I should pursue for diagnosis/treatment. Should I come to the CCF?
Might there be a connection between my symptoms and perhaps an allergy to the cortisone injection? Could the cortisone have been tainted and caused a severe reaction? Is the fact that I had a passing upper respiratory bug two weeks prior more evidence of "post-viral?"
Thank you in advance for your help and again, my apologies for the very lengthy post.
ER
This is quite difficult to figure out, and I encourage you to follow up on the thyroid abnormalities. An endocrinologist should be able to interpret the lab results in the context of your overall situation. Whether it has anything at all to do with your paresthesia, it is important to be sure it doesn't go un-evaluated.
I don't know what you have. It is often difficult for neurologists to localize numbness and paresthesia. That is, our task is to figure out where in your nervous system the symptoms (paresthesia, etc) come from. The first clues come from your own descriptions of the pattern and timing. The physical exam helps narrow down what it may or may not be, and occasionally tests must be done.
The only thing I can do here is to help you understand what tests might be done and why (many of which you have reported above). That way, you can go back to your neurologist and ask appropriate questions, or know when to seek a second opinion.
An EMG and nerve conduction study (NCS) evaluate how the peripheral nervous system work. That is, the nerves and nerve roots are the subject of the study. If something is wrong in your spinal cord or brain, the EMG/NCS is not the test to rely on to figure it out.
An MRI (brain, c-spine, etc) evaluates the integrity of the central nervous system (brain and spinal cord), and to some degree the nerve roots that come out of the side of the spinal cord.
Evoked potential studies (SSEP, VEP, and AEP) are used to evaluate the integrity of long fiber tracts in the nervous system. In the SSEP (somatosensory) study, there is a portion of the signal which is carried by nerves and the rest of the signal is carried in the cord and processed at various stages of the brain. SSEP studies are used most often to detect areas of demyelination in the central nervous system. Hence, they are useful for diagnosis of MS.
Migratory paresthesia is very difficult to pin down. From the information provided, I am not particularly suspicious of MS. Hard to say if you have a neuropathy. I think an EMG would be a must for that diagnosis. The Guillain-Barre variant you mentioned is a type of neuropathy - can't jump to that conclusion, and it seems unlikely anyway.
It may or may not be appropriate to say this is post-viral, but it still would be more satisfying to know WHAT part of the nervous system is affected.
If you want to know if this is Lyme disease, ask your doctor if he/she has done the appropriate blood test for Lyme disease.
I hope this helps. If you desire a second opinion, we are available at 800 223-2273, ask for extension 4-5559 (neurology appointments).
CCF MD mdf
Follow Ups:
Ongoing Bizarre Symptoms - No Diagnosis/Treatment ER - Please Elaborate 5/03/1999
(0)
Ongoing Bizarre Symptoms - No Diagnosis/Treatment mk 5/02/1999
(17)
Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment CCF MD mdf 5/03/1999
(16)
Ongoing Bizarre Symptoms - No Diagnosis/Treatment mk 5/03/1999
(15)
Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment Karen D'Angelo 5/03/1999
(14)
Ongoing Bizarre Symptoms - No Diagnosis/Treatment ER - To Karen 5/04/1999
(13)
Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment MEG (not a doctor) - concerning TENS electrical sensations 5/05/1999
(12)
Ongoing Bizarre Symptoms - No Diagnosis/Treatment ER - To MEG 5/05/1999
(3)
Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment ER - To MEG - My email address!!! 5/05/1999
(2)
Ongoing Bizarre Symptoms - No Diagnosis/Treatment michele 5/05/1999
(1)
Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment ER - To Michele 5/05/1999
(0)
Ongoing Bizarre Symptoms - No Diagnosis/Treatment Shelly 5/05/1999
(7)
Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment Jill 5/06/1999
(6)
Ongoing Bizarre Symptoms - No Diagnosis/Treatment Ted 5/22/1999
(5)
Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment Bonnie 5/23/1999
(4)
Ongoing Bizarre Symptoms - No Diagnosis/Treatment tina 5/24/1999
(3)
Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment P 6/03/1999
(2)
Ongoing Bizarre Symptoms - No Diagnosis/Treatment Elizabeth 6/03/1999
(1)
Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment Vivian 6/07/1999
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