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Neurology (Expert Forum)
MS symptoms, but negative tests. Which way to go?
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MS symptoms, but negative tests. Which way to go?
by tinglingnumbinPA, 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.
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***@****
I never thought the rollercoaster of diagnostic test would ever end.But everything under the sun was ruled out.
To the others that have posted – Thanks for your input and for sharing your experiences. It helps to know I am not the only one in this frustrating situation. Your input has certainly helped, especially from those with very similar symptoms. Good luck to all of you.
My story:
Not sure what are related or not--
Healthy 34 year old female. In July 05 I noticed strange painful blisters on my fingers. Told my my derm that it looks like dyshydrotic exzema (eczema)--but it HURTS, doesn't itch. Shortly thereafter I can't wear tennis socks because the elastic hurts my ankles. Then I start to notice that it hurts to lift somewhat heavy items---then hurts to wrap floss around my fingers. It leaves dark welts. November 05 feel more tired than normal. December my hands and feet feel like they are BURNING--like someone has smeared capsacin all over them. I can't tolerate blankets any longer. I can barely handle the heat from clothing on my skin. Feb 06--clothing feels like sandpaper. March 06--headaches everyday. May 06--deep muscular pain all the time in arms/legs/shoulders and serious fatigue. Now I have bouts of vertigo as well. July--strange intermittant tingling in my ankles/tops of feet. Kind of feels like they are sleeping--that similar "buzz". Doc suspects MS and orders MRI of brain. Husbands dad is a Neurosurgeon and tells us that basically there is one teey-tiny spot on my brain and we should just watch it. Inconclusive. I am going to see a neorologist in two weeks.
Does anybody have any comments? I am going absolutely crazy here. I am not nuts. Thank God I have an internist and dermo who know me and know I am as sane as they come....
I'd love to get to Mayo or the Cleveland clinic but my insurance only pays a small percentage for out of network. Modern medicine today is HORRIBLE at diagnosing anything out of the ordinary.
Thanks for the help and support!
I have MS, and was dx in October 04 after a massive exaserbation where I basically lost the use of everything from the waist down.
This has mainly returned, albiet from the feeling in my legs, and everyday's a surprise to wake up to. I now walk slower, can't play the sports I did, and my eyesight varys with the heat.
For years before this I had weird ailments from vertigo, migraines,tingly bits, my current Dr said I had mental problems, and was imagining the symptoms I had. So off I went to see a Phychiatrist, convinced I was going a bit nuts. Lucky for me I wasn't, but looking back I still get very angry at the treatment i received back then. But I also do realise that MS is a hard condition to diagnose. I was lucky that my first MRI showed many lesions, varying in sizes, allowing a definate diagnosis.
But even if some of you do have MS, it's definately not the end of the world. I returned to work, 3 days a week, have a happy productive life, and can do most things, even if they are a bit slower. I am on treatment of Betaferon every second day, and it has helped me immensely! You don't like injecting, but hey you do get used to it.
Only you know there's something wrong, so persevere! See different Dr's, and try to get to the bottom of it. But don't be scared that MS is a death sentence, as it certainly is not. It's just an inconvienience at times, nothing more.
Good luck!
Maria
You can read my full story here:
http://medhelp.org/forums/neuro/messages/33611.html
We both share a common theme: We've visited countless doctors who have given us countless tests with zero answers, short of "it's all in your head."
To this day, I still periodically endure symptoms that were at their worst a year ago. Recurring symptoms include a burning sensation on my tongue; tingling around the lower part of my mouth and face; muscle twitching in my arms and legs; tinnitus; and burning/pins-and-needles sensations and pain in my knees, feet, ankles and lower back.
You'll get a lot of people suggesting you look into Lyme Disease. One thing I'd caution you about is that there is a lot of misinformation being promoted on both sides of the fence regarding this disease. Don't buy the hype on either side. If there is strong circumstantial evidence to support Lyme disease, then definitely try the trial of antibiotics (though I think you'll find doctors are reluctant to treat Lyme Disease without serologic "proof").
If you want to email me for more details or share "war stories" about our issue, you can contact me via my hotmail account. (it's my username @hotmail.com).
but now it has been 7 months, my symptoms are ALL only on the LEFT side of my body- weakness in arm/leg, tingling in face and tongue feels really odd (like the back is 2 inches thick at times!!) the symptoms are minimal one week, then horrible the next..........so i'm really rethinking this 'stroke' diagnosis...
anyone know else can cause neuro issues but ALL ONLY on ONE 1/2 of the body??? i'm hesitant to go back for more testing becuase it didnt seem to help most. (i had mri and etc about 4 months ago- all looked fine except a small pitutary tumor taht nobody seemed too concerned about)
katy
The standard Lyme disease tests most docs use is called the ELISA test and this test is so unreliable I am wondering why they even use it.
**Lyme disease is a clinical diagnosis** If your ELISA test comes back negative and your doc says "Well you don't have Lyme disease" don't walk away from this doctor...RUN!
please email me at the nickname above @ gmail.com
thanks,
Sue
I was told I have signs of MS but MRI negative.
I go online all the time looking for answers and see so many related stories and no one has answers it's amazing.
I was told by my orthopedic to get blood work to check for Neuro Toxins - that is not a normal blood work up so maybe ask your doctor too!
If anyone finds any answers please post them and I will do the same.
I wish everyone luck!!