Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Neurology (Expert Forum)
MS symptoms, but negative tests. Which way to go?
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
MS symptoms, but negative tests. Which way to go?
by tingling§numbinPA, Jul 25, 2006 12:00AM
Hi. Up until last August (2005) I was a healthy, active female who had just turned 40 years old. My only significant medical history was thyroid removal (surgically, not radiation) at age 16 due to hyperactive thyroid (since that time I have taken synthroid on a daily basis), an appendectomy at age 34, and a few bouts of food poisoning. Also, I had very bad monthly headaches at ovulation and menstruation but have virtually eliminated them for the last 14 years by taking magnesium supplements (which I continue to take). I have 2 grown children (ages 20 & 22). I am white, 5’4”, and typically weigh around 105 lbs. There is no known history of neurological disorders in my family.
Last August 7th, late in the evening the right side of my face began to tingle. My upper right lip began to swell. At the same time the vision in my right eye blurred and my eye felt cold. The onset was sudden and I never had experienced any feelings like this before. I went to the ER fearing a stroke, but was checked over, told I was fine, and to follow up with my family doctor.
By the next day the tingling had moved to my lower right arm, upper left arm, and spots on my legs. These areas were very specific and would lessen or intensify at times but never go away. Over the next few days I began to experience numbness where the tingling patches were, weakness in my hands and a deep-down feeling of fatigue banding across my upper back. I went to the family doctor who ordered an MRI and said I needed to see a neurologist, as she felt I had MS symptoms. She also ordered extensive blood work, including Lyme disease, B-12, and thyroid function.
I had the MRI done and was able to see a neurologist within a few days. The symptoms were staying the same, with varying intensity. The MRI returned normal and a second one, of the brain and C-Spine (with and without contrast) was ordered. The physical evaluation went well, and other than weak hands and areas of numbness (where I couldn’t feel a needle *****), I passed all of his tests. My reflexes were fine. His initial opinion was also to try to confirm MS.
The second MRI also returned normal. A spinal tap was ordered, also with normal results. The muscle weakness and fatigue worsened and I began to experience quite a bit of pain and discomfort. Additional blood work and a more advanced Lyme disease test were ordered, all returned with normal results.
By this time nearly a month had past and I still had the same symptoms. I would have days where the muscle weakness was nearly gone, but then would come back (the numbness and tingling never relented). A nerve velocity test (the shocking cattle prod) was performed, with normal results. The neurologist considered performing an EMG test, but I chose not to, as he admitted it was not likely to tell us anything new.
At this point (approximately 2 months after the initial episode), other than my symptoms, there were no findings to confirm MS. Clean MRI’s without lesions, nothing in my spinal fluid, and all other tests with normal results. The symptoms had begun to lessen and it was decided to see if they self-resolve. I visited the neurologist in November feeling pretty much back to normal with the exception of some residual numbness on my face. He explained that he felt swelling in my brain, most likely in the C-Spine area, caused the episode. He could not offer a reason for the swelling other than a possible virus that I might have contracted. His opinion was to continue to let it self-resolve and hope it never returned.
By the end of December I felt completely back to normal, all of the numbness, tingling, and weakness were gone! Looking back, I realized the symptoms cleared up in the reverse order in which they came. The last to go were the first ones I had and the most severe were in the middle and shortest lived.
At the end of May (2006) I had another sudden onset of symptoms. They are all virtually the same as before, although some of the areas of numbness and tingling have moved (while others are in the same spot). The weakness in my hands has been very pronounced this time and occasionally spreads to my legs. I revisited the neurologist who ordered another MRI and blood work. As usual, all of the results were normal. My neurologist is still convinced I have MS and that the tests just can’t pick it up. He says it cannot be anything else. In late June he recommended I see another neurologist and recommended a few at big-city hospitals. I hesitated, expecting another round of “normal” tests, and thought I would wait to see if it once again self-resolved.
I am now nearly 2 months into this episode and the symptoms are significant and worsening. Although I have good days and bad days, last night (7/19) they intensified significantly. Today I have very little strength in my lower arms and legs. It is hard to walk. My back fatigue is extreme and causing great pain. I feel hot inside but do not have a fever. I called the doctor I was referred to (in Philadelphia) but cannot get an appointment until December.
What course of action would you recommend? I am in constant pain/discomfort and do not have a doctor to see at this point.
If this is not MS (no lesions or myelin proteins) what else could it be? Could it still be MS, even with 3 clean MRI’s (two of them six months apart) and a clean spinal tap?
Are there any types of viruses or autoimmune diseases that could cause these symptoms that I should be looking for? Even with negative tests I am really beginning to suspect Lyme Disease.
Should I be on any medication to reduce these symptoms when they appear?
Thank you for your help and advice.
Last August 7th, late in the evening the right side of my face began to tingle. My upper right lip began to swell. At the same time the vision in my right eye blurred and my eye felt cold. The onset was sudden and I never had experienced any feelings like this before. I went to the ER fearing a stroke, but was checked over, told I was fine, and to follow up with my family doctor.
By the next day the tingling had moved to my lower right arm, upper left arm, and spots on my legs. These areas were very specific and would lessen or intensify at times but never go away. Over the next few days I began to experience numbness where the tingling patches were, weakness in my hands and a deep-down feeling of fatigue banding across my upper back. I went to the family doctor who ordered an MRI and said I needed to see a neurologist, as she felt I had MS symptoms. She also ordered extensive blood work, including Lyme disease, B-12, and thyroid function.
I had the MRI done and was able to see a neurologist within a few days. The symptoms were staying the same, with varying intensity. The MRI returned normal and a second one, of the brain and C-Spine (with and without contrast) was ordered. The physical evaluation went well, and other than weak hands and areas of numbness (where I couldn’t feel a needle *****), I passed all of his tests. My reflexes were fine. His initial opinion was also to try to confirm MS.
The second MRI also returned normal. A spinal tap was ordered, also with normal results. The muscle weakness and fatigue worsened and I began to experience quite a bit of pain and discomfort. Additional blood work and a more advanced Lyme disease test were ordered, all returned with normal results.
By this time nearly a month had past and I still had the same symptoms. I would have days where the muscle weakness was nearly gone, but then would come back (the numbness and tingling never relented). A nerve velocity test (the shocking cattle prod) was performed, with normal results. The neurologist considered performing an EMG test, but I chose not to, as he admitted it was not likely to tell us anything new.
At this point (approximately 2 months after the initial episode), other than my symptoms, there were no findings to confirm MS. Clean MRI’s without lesions, nothing in my spinal fluid, and all other tests with normal results. The symptoms had begun to lessen and it was decided to see if they self-resolve. I visited the neurologist in November feeling pretty much back to normal with the exception of some residual numbness on my face. He explained that he felt swelling in my brain, most likely in the C-Spine area, caused the episode. He could not offer a reason for the swelling other than a possible virus that I might have contracted. His opinion was to continue to let it self-resolve and hope it never returned.
By the end of December I felt completely back to normal, all of the numbness, tingling, and weakness were gone! Looking back, I realized the symptoms cleared up in the reverse order in which they came. The last to go were the first ones I had and the most severe were in the middle and shortest lived.
At the end of May (2006) I had another sudden onset of symptoms. They are all virtually the same as before, although some of the areas of numbness and tingling have moved (while others are in the same spot). The weakness in my hands has been very pronounced this time and occasionally spreads to my legs. I revisited the neurologist who ordered another MRI and blood work. As usual, all of the results were normal. My neurologist is still convinced I have MS and that the tests just can’t pick it up. He says it cannot be anything else. In late June he recommended I see another neurologist and recommended a few at big-city hospitals. I hesitated, expecting another round of “normal” tests, and thought I would wait to see if it once again self-resolved.
I am now nearly 2 months into this episode and the symptoms are significant and worsening. Although I have good days and bad days, last night (7/19) they intensified significantly. Today I have very little strength in my lower arms and legs. It is hard to walk. My back fatigue is extreme and causing great pain. I feel hot inside but do not have a fever. I called the doctor I was referred to (in Philadelphia) but cannot get an appointment until December.
What course of action would you recommend? I am in constant pain/discomfort and do not have a doctor to see at this point.
If this is not MS (no lesions or myelin proteins) what else could it be? Could it still be MS, even with 3 clean MRI’s (two of them six months apart) and a clean spinal tap?
Are there any types of viruses or autoimmune diseases that could cause these symptoms that I should be looking for? Even with negative tests I am really beginning to suspect Lyme Disease.
Should I be on any medication to reduce these symptoms when they appear?
Thank you for your help and advice.
Doctor's Answer
by CCF-Neuro-M.D.-SH, Jul 25, 2006 12:00AM
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes. The symptoms/story you describe is not classic for any particular disorder, and thus your evaluation needs to be taken to the next level to evaluate for less common diseases.
It would be uncommon for multiple sclerosis (MS) to present in this way. MS can be tricky to diagnose at times, and some "variants" will have a negative MRI brain, but have positive findings elsewhere (For example: Devic's affects the eyes and the C-spine, not the brain). However, the symptoms that you describe appear to involve the brain as well, making this explanation unlikely for you (face and vision involvement). The only test for MS that you did not describe was a visual evoked potential (evaluates for past optic neuritis) which may be helpful given your past history right eye blurring.
For the question of lyme disease, I would recommend a trial of antibiotics. Your symptoms are compatible with lyme disease and tests can often be negative until treatment is started (the agent that causes lyme (Borellia burgdorferi) is immunosuppresive). It may not turn out to be lyme, but a trial on antibiotics is low risk and potentially very helpful. I would also recommend a SPECT scan of the brain (lyme can cause vasoconstrictive disease that causes dysfunction without MRI abnormalities).
Given the symptoms you describe, I would recommend a some screening lab work to look for more uncommon diseases that can cause similar symptoms including urine porphyria screen, anti-thyroid antibody panel (you could still have antibodies even if your thyroid is removed), paraneoplastic panel (looking for antibodies against occult tumors), ACE for sarcoid, EEG for seizures, Lactate and pyruvate from the CSF and blood (for mitochondrial disorders). Serum and Urine amino acids, urine organic acids, ammonia level(metabolic workup).
Stress can also cause some very strange symptoms that can mimic neurologic conditions. This should only be considered after the testing is complete, but does happen and should be kept in mind.
I would also recommend that you take your case to large academic Neurology department in your area. You will need the best minds you can find to help you. I hope this has been helpful.
It would be uncommon for multiple sclerosis (MS) to present in this way. MS can be tricky to diagnose at times, and some "variants" will have a negative MRI brain, but have positive findings elsewhere (For example: Devic's affects the eyes and the C-spine, not the brain). However, the symptoms that you describe appear to involve the brain as well, making this explanation unlikely for you (face and vision involvement). The only test for MS that you did not describe was a visual evoked potential (evaluates for past optic neuritis) which may be helpful given your past history right eye blurring.
For the question of lyme disease, I would recommend a trial of antibiotics. Your symptoms are compatible with lyme disease and tests can often be negative until treatment is started (the agent that causes lyme (Borellia burgdorferi) is immunosuppresive). It may not turn out to be lyme, but a trial on antibiotics is low risk and potentially very helpful. I would also recommend a SPECT scan of the brain (lyme can cause vasoconstrictive disease that causes dysfunction without MRI abnormalities).
Given the symptoms you describe, I would recommend a some screening lab work to look for more uncommon diseases that can cause similar symptoms including urine porphyria screen, anti-thyroid antibody panel (you could still have antibodies even if your thyroid is removed), paraneoplastic panel (looking for antibodies against occult tumors), ACE for sarcoid, EEG for seizures, Lactate and pyruvate from the CSF and blood (for mitochondrial disorders). Serum and Urine amino acids, urine organic acids, ammonia level(metabolic workup).
Stress can also cause some very strange symptoms that can mimic neurologic conditions. This should only be considered after the testing is complete, but does happen and should be kept in mind.
I would also recommend that you take your case to large academic Neurology department in your area. You will need the best minds you can find to help you. I hope this has been helpful.
Member Comments (19)
by patsy10, Jul 25, 2006 12:00AM
To: tinglyand numb in PA
You sound exacly like me. I've been like this for over a year now continuously. I've had all the tests you've had plus thoracic and lumbar